Musing...

I was looking at old baby pics of Boeboe today (taking pics so that I have them digitally to post on here, they're all on films from those days!). And 2 pics stood out for me. Both was taken of her feet, from the bottom. The one a few days after birth, the other around age 1. And both times, both feet was FLAT. Though, the one of age 1 was a little, teensy tiny bit more arched than the one at birth. But stil...FLAT. I think, as soon as Boeboe's back, I'm going to take a pic of her feet at the moment. I'm sure it would clarify to anyone who still wondered if he feet is really arched or not. I know, all babies feet start out flat and then get their arch later on. But this...it's such a huge difference from that pics until how it looks today.

Even her grandparents looked at her feet a few days ago, exclaiming how abnormal they looked. Her feet was dirty, and the dirt didn't come close to the inside arches. Those parts were as clean as after her bath. I think when I saw that baby feet photo today, I realised...this really is neurogenic. And it really is progressive. I'm not making it up, or imagining things. It is nice to get little confirmations like this, to squash the lingering doubts if we're doing the right thing...going for this surgery.

It also makes me feel a tiny bit better about something that's been bothering me for ages. Around age 4, I got impatient with Boeboe, because every time we'd take a walk, she wouldn't walk in a straight line. She'd keep bumping into me, or turning in front of me so that I'd trip over her. It riled me! Age 5, precisely 2 years ago, the in-laws were here for Christmas and we took a stroll to look at all the lights. FIL (father in law) was walking behind me and Boeboe, and I was shouting at her to walk in a straight line and stop bumping into me (she was walking next to me, pushing her little doll in a stroller).

FIL called me to him, while Boeboe walked next to her daddy. And FIL showed me the problem. Boeboe was walking with her toes pointing inwards, which caused her to walk skewed. She couldn't walk in a straight line! I was heavily upset. Mostly because I never noticed it! How could I have missed this?

Well, that's where our journey to the pead started, who referred us to a bio-kineticist, who immediately told us there's some major problems and referred us to an orthopediac surgeon. He just kept a close watch on it all and said it's still okay.

Well, now I feel so much better. If her high arches wasn't there from birth, but appeared around age 5, then maybe her toe-in wasn't there either, and I didn't miss it! It appeared later! It all makes sense, and it makes me feel quite relieved, and so much better. Silly, huh!

And so 5 is down to 3 for now

 

Gosh, I'm not a good blogger, am I? But it's been a very busy time. We've prepared for Christmas, and now it's all over again. We had the grandparents over, and the kids had an absolute blast. They loved all the excitement, the gifts, the vibe, everything. We really spoiled them this year. Maybe we just felt they deserved it. All of us had such a tough year. Their little faces were just priceless, when they saw what “Father Christmas” brought them. Wow, it's been magical.

So today, the in-laws left us, and took Boeboe and Mr N with them...:-( They live about an hour's drive away from us, so they're going to visit them for a few days. I'm sure they're going to have a blast, and the in-laws love it, spoiling them rotten. But for me, daddy and monkeyman (which we felt were still too young to leave us for so long) it's sad. It's lonely, and it's quiet. Monkeyman is okay, he loved speaking on the phone with them tonight. And we'll probably enjoy the rest, and the peace, I'm sure. Fortunately it's only for 4 nights. On New Year's day, Saturday, we'll fetch them again.

We have a diagnosis, finally!!!

This is it! Yes, this is it!!!! WHOOHOO!!!! I'm so happy today, I can simply just dance! We saw the new neurosurgeon today, dr L, and he is simply just marvellous! No other words, just marvellous! He's young, dynamic, energetic, to the point, efficient, and best of all, he knows, believes in and has studied occult tethered cord!!!! And...he believes Boeboe has it! He said we cannot loose anything to operate for it. We can hopefully, just gain! He says he sees a tethered cord patient about every 2 or 3 years, so it's a rare condition. But he's never had an occult tethered cord. My daughter is his first (scary thought!). But, he's done tethered cord operations before, so I trust him. He said when he studied it 5 years ago, he only read about studies consisting of 6 or 8 children, so he asked me to send him all the research I did on bigger studies. I know of one study containing 60 children with occult tethered cord.

He said that he works very closely with dr M (they're at the same hospital) and he would not want to just go and operate on a patient of dr M without first consulting with him. So he's going to speak to him once dr M comes back from holiday (which is unfortunately only around mid Jan!!) and then he'll call us. Hopefully he can convince dr M that it won't be a huge mistake to go and operate on Boeboe. That she indeed has an occult tethered cord, and that it indeed really IS a true condition, and just because you studied 30 years ago, you shouldn't be so opposed to new things in your field that has started to prop up in the past 10 years. I just hope dr M can be more open, and won't try and convince dr L not to operate! That would be a serious step back for us. But, dr L looked 100% sure of his case, and sure of himself. What I liked about the visit, is that he didn't expect Boeboe to have serious neurological deficits. What people seem to forget, is that having an occult tethered cord, is NOT like having a tethered cord, though of course very similar. But, an occult tethered cord could be much less serious. Now, Boeboe does NOT have neurological deficit, like most tethered cord cases. And every time someone tested her, they expected her to have it, else it can't be tethered cord. Well, it's not tethered cord, it's occult tethered cord. THUS, the signs are more subtle, not as clear cut and obvious. Except of course, with her bladder and bowels. So dr L knew this. He didn't even test her on all types of neurological tests. Because it honestly doesn't really make a difference to his diagnosis, now does it? Even with the neurogenic bladder. He diagnosed her with an occult tethered cord, after listening to her symptoms, and how it progressed. Only after diagnosing her, I mentioned the bladder being neurogenic, and he was happy/surprised about that, and nodded his head. Clearly, because it fits.

He also didn't expect to see anything on her MRI's. He did not look at it, wondering what they're missing. He glanced at it, remarking “it's clean, just as we would expect it to be”. He gets it! He really gets occult tethered cord. I can't tell you how relieved I am. How good it feels to know that we're in the hands of someone that tells US that it's occult tethered cord, and that we must operate. And not US telling THEM what we think it is, or what should be done about it. I am so so so relieved, and happy tonight...:) I must be the first person ever, feeling relieved once their daughter has been diagnosed with a tethered cord. Gosh, I feel silly, but after this long hard year of fighting for my daughter, I really am just relieved. Her disease has a name. We already know the symptoms, we already LIVE the disease, we just needed its name. To know what to do about it. I refuse to sit and wait, hoping she'll outgrow this thing, and in the meantime it's just getting worse. I want to tackle the cause, and not just throw botox at the symptoms. So for now, I'm relieved, and I'm looking forward to the operation. Though, I'm sure within time, I'm going to get very, very nervous!

In the meantime, Boeboe is only now getting better from the UTI. Took her a whole week of a/b's...:( Poor little thing, it really was a terrible one. Oh, and the urologist's office phoned. Her botox has been moved to the 22^nd of January. But now we're not sure if we should still do it, or not?

Eyes, teeth and telephone calls

Some more check-ups. It's just never ending with a special-needs child, is it?!

Today we went to the eye specialist, or ophthalmologist. Both me and Boeboe. He diagnosed me with the beginning stages of glaucoma, though there is no pressure yet. So I have to see him again in 6 months time, and thereafter yearly until such time I experience rising pressure. In which case he'll start to treat me. For Boeboe we had much better news. He said her cornea's are still 100% fine, even though she has alacrima (lack of crying tears – from birth!). He said he wants to see her yearly, just to make sure her cornea's stay in a good condition. In the meantime, he declared her eyes 100% fit and well...:-) No need for glasses even! Whoohoo!!

This afternoon we went to the dentist, and we had some bad news this time. Boeboe has EIGHT cavities!! Now, tell me. How can this be NORMAL for a child that brushes twice a day, and do not eat sweets every day??? The dentist believes it's due to her reflux. But that means it's not under control? Urgh! When does she get a break, this little girl of mine? She's a real trooper though. Sat in the chair so that they could fix 2 of the cavities live (without local anaesthesia). It's baby teeth, so it didn't hurt. The eighth cavity which she'll fix last, is on a permanent molar, so that will require an injection...:-( She scheduled 3 more visits. We'll fix 2 cavities with every visit during January. What a busy January await us!

Well, now to today's exciting news!!! In between the morning's ophthalmologist visit, and the afternoon's dentist visits, we had a call. Now first let me explain. After the urologist told us to start looking at other neurosurgeons, I made a list of a few I knew of, and called the first one on the top. He's in our closest hospital (15 minutes drive) so I thought I'd start there. I liked the sound of his name...:-) Well, I told the receptionist the whole story, about the urologist believing my daughter may have an occult tethered cord, but we don't want to make an appointment with one neurosurgeon after the other, trying to find one that knows and believes in occult tethered cord. I really do not fancy going from one to the next, listening to another speech like the one from dr M that pleaded with us not to cut, because she WILL outgrow this. I simply cannot be deterred from what I believe in just like that, and patiently sit and fold my arms like I did when Boeboe was age 3, age 4 and age 5, without trying to help her. I truly believe we're past waiting, past outgrowing it.

In any case, the receptionist was extremely kind and sweet, and said she'll speak to her neurosurgeon, and get back to me on Wednesday. I kinda didn't expect too much, having developed a fatalistic attitude during the past year where we've been disappointed in the medical community over and over again. Even laughed at once, and called a liar in my face. And told my daughter is lying to me. But, let me not dwell on that now.

So, today the receptionist called me (and it's only Tuesday)! She said she spoke to her neurosurgeon, dr L, and that he are very worried about my daughter, and that we please must come in TOMORROW!!! WOW WOW WOW WOW WOW. Now, if you don't live in South Africa, you won't realise how amazing this is. You simply DO NOT GET INTO A SPECIALIST THAT SOON! It really totally blew my mind. Compared to the service we had previously from specialists, suddenly we had someone that was interested and WORRIED about my daughter, so much so, that he's pushing us in! And not within weeks or months, but within one day! I was overwhelmed, and told the receptionist as much, and thanked her profusely, promising her to be there at 9:30am as she requested. Could this be it? Could this really be it? That at long last, we've found a neurosurgeon that's going to help us? Let's pray so, indeed!

Not so good news...

Firstly, a little update. We went on holiday! It was so nice. We camped for a week. Just swam, rested and spent time with each other. We really needed this break. The weather was perfect. We mostly had sunny, hot days with blue skies.

They spent lots of time in the pool

Yummy mommy, this chocolate cookie was nice!

Can I have more?

 

Mr N



Boeboe

Boeboe really tried her best to keep it all together, but that resulted in her being like a little energiser bunny! Hopping up and down, trying to control the bladder spasms as much as she can. It only lasted 3 days, before her energy ran out and she lost control, but at least then calmed down again. We had some family camping with us, so I totally understand why she tried her utmost best not to have an accident. It amazes me, the mind's power over one's body!

So back to today. We've been to the urologist. And I'm sad. He basically told us today that he doesn't believe anymore (like he said pre-botox, 6 months ago) that she'll outgrow her bladder spasms after the next botox session. He previously said she'll need 2 botox sessions, 6 months apart, then she'll be “all cured”. This time he said she'll need botox every 6 months for the next 5 years, and thereafter he'll implant a neuromodulater that'll stimulate the nerves. Hoping that it would be a more long-lasting and better working option for her than the botox. Though, for the next botox session, he will inject more botox into the bladder. Paralysing it more than the first session. For the first, he injected 100 units. Next time he'll inject 120 units. The problem is, if he injects too much, it could potentially paralyse the bladder to such an extend that she'll need to self-catheterise from there on. Which totally freaks me out, after her 2 absolutely horrifying experiences with being catheterised before. I honestly felt like I pinned her down while someone “raped” her body. That feeling, for the mother of a 6-year old girl, is truly one of the worst nightmares to experience. I will never, ever forget that tremendous weight that settled in my heart while I held her down with my body, looking into her eyes – so full of horror, fear, helplessness and utter terror. Screaming hoarse, raw, heart wrenching screams.

The urologist looked at the diary I kept about all her accidents (nr 1's and 2's!) as well as all her falls. And he asked us about her history again. And this time he said...”yes, it indeed is suggestive of an occult tethered cord”. He urged us to decide if we want surgery or not, and to find a neurosurgeon that knows his stuff. What a turnaround!!!

In the meantime, her botox session has been booked for the 15^th of January 2011. It's shortly after school starts again after our summer holiday season. He unfortunately said he cannot help us with the nr 2 problem. Once she gets the neuromodulater in 5 years time (when her body has grown big enough to handle such an intrusive instrument), it may help for both bladder and bowel. Until then he has no advise. The good news of today's visit is...NO MORE MEDICATION!!! We can stop the oxybutynin! He said (precisely my thoughts as well!) that the little gain is not worth the severe side effects in her case! Whoohoo!!! I'm so relieved we don't have to go to grade 2 next year, with headaches every day and cognitive problems due to these meds.

Oh, and one last bad thing. Since coming home on Thursday, Boeboe complained about pain when urinating, so the urologist tested the urine and yes, UTI. A bad one. She's urinating blood now, but hopefully the a/b's will sort her out quickly. I feel so sorry for her.

Scarlet fever, EEG's and some more appointments...

We've been to the pead and she wants us to continue with the horrible medication...:-( She also wants us to consider the 2^nd set of botox soon, and hope that if we ever can get Boeboe continent for a year, we may be lucky enough that she'll outgrow her problems (because dr M, the neurosurgeon, also thought so.) Urgh. Why oh why does everyone hope she's going to outgrow it??? Am I (and her daddy) really the only people that notice the DECLINE in function? If she were to outgrow it at some point, shouldn't it get BETTER, or at least STABILISE at this age already???! Let me list her symptoms over the past years, then you tell me it's not progressing:

Age 3: Potty trained very easily, but continued to have urinary accidents about once a week. No faecal accidents.

Age 3½ : Accidents is now about twice a week. Never any faecal accidents. Though, struggle with constipation.

Age 4: Accidents is now sometimes daily, though she still has good weeks. Constipation is worsening.

Age 4½: Faecal accidents started...:-( This is a huge blow to all of us. It happens about once a month.

Age 5: A UTI, and accidents is multiple times on some days. NO amount of bribery, discipline motivation, anything helps AT ALL. Even the play therapist she saw for months, said she's the FIRST child ever for whom her therapy didn't help for incontinence. She believes it's functional (meaning, it has a physical cause).

Age 5½: Faecal accidents has progressed to about once a week now.

Age 6: Urinary accidents is almost daily, faecal accidents couple of times a week. Saw the first urologist, who tried oxybutynin for the bladder (it stop bladder spasms) and movicol to clear out the constipation. It didn't help at all.

Age 6½: Nigh time accidents has started...:-( She's been dry at night for 3½ years! Only an accident about 5 times a year at night, now it's almost every night. This is another huge blow. Three months after this started, she got her first botox injections into the bladder. What a difference this made into the night time accidents! It STOPPED it! Completely. WOW. That tells me that it was spasms in the bladder causing it. Thus, a physical (or neuropathic) origin, and not psychological.

Looking at that list, I simply cannot believe how STUPID I've been. Age 3 and 4 I could've thought it's “okay”, that she'll outgrow it. But age 5 I really should've realised it's not normal. I did take her to the pead, who said she just needs stricter discipline. And I fell for it...:-( How on earth can a mother fell for that line????

Well, what's done is done. Back to the issue at hand. A while ago, I wrote to the paediatric neurosurgeon in the children's hospital in Cape Town. They requested her MRI's, which I couriered to them. I got a message after that, stating that they don't know if it's worth it to put her through the risk of surgery, and could it be braindamage due to her sleep apnea as a baby? I emailed her peadiatric neurologist about this, and she said no, she won't believe that. So I phoned the neurosurgeon and he said I should email him. I did, and unfortunately he has since yet to reply...:-( I guess that's it then. He's not going to come to our rescue. How sad for us.

On the upside! We took Mr N to his paediatric neurologist for an EEG and check-up, and he halved Mr N's medication for his epilepsy! He's now on such a low, maintenance dosage it's almost negligible. It did cause a bit of an emotional upheaval again, adjusting to the lower dosage. The neurologist said that if he continues to have clear EEG's in 9 months time, we can completely take him off!! Isn't that just wonderful?

Some “bad” news is that Mr N caught scarlet fever! At age 9, goodness me. He had it really really bad. Starting to feel a sore throat on the Thursday, fever from Friday, vomiting and nausea following and by Sunday he had the rash. Off to the dr, and on a/b's. By Monday (yesterday) he was feeling a bit better, today even more so. I was scared that the a/b's won't help so quickly, because he cannot take penicillin (allergic), which is the first choice for scarlet fever, but fortunately I was unnecessary scared. At least Boeboe and Monkeyman won't contract it from Mr N, because both of them had it already.

Another wasted hour...

 

Today, we went back to the neurosurgeon we saw in March this year. He really took his time, chatting to us and looking Boeboe over very carefully. As usual, he was kind, sweet and gentle. We showed him a video we took of Boeboe, clearly showing her drop foot and how her toes scrape over the floor, even causing her to fall on the video. He admitted that it does look like drop foot, but we'll have to see a neurologist on that, because he doesn't understand where it comes from, since she has no neurological deficits. (Aarrgghhh!) And that he thinks it therefore must be learned behaviour, and not neurological from origin.

So, he STILL does not believe or want to entertain the thought of an occult tethered cord. (An occult tethered cord is a tethered cord that is hidden, thus it is not picked up on MRI like a “normal” tethered cord). He pleaded with us to just wait. Wait until she magically outgrows all her problems. While I may have thought it possible if she only had the urinary incontinence, I simply cannot accept that one little girl could just by chance have so many of the symptoms of a tethered cord, but it is “just” developmental problems. It simply does not make sense to me. The neurosurgeon, dr M, asked us to please not let anyone cut her open...:-( Gosh, how does he think we must feel after a statement like that??? HE's the one that doesn't believe in an occult tethered cord. WE believe in it! And we believe our daughter may very well have this! To now ask us not to do anything about what we believe in...:-( As if we're going to put our daughter through unnecessary surgery and just let someone “cut her open”, for no apparent reason! Urgh! The visit has been a total waste of time. Why on earth did the urologist and pead insisted that we go back to him??? Next time, I'll follow my instinct and go to a new one!

It's not going well with Boeboe. She's struggling to cope at school. We (me and her teacher) believe it's the medication (oxybutynin) she's on. Up until end September she did extremely well. Then it started exactly one month ago, and things are going downhill fast. Her short-term memory seems to be affected (even more so than usual) and her concentration span is severely limited. She complains of daily headaches, severe enough to restrict activity. Her stomach has completely stopped again, and we're on high doses of lactulose, and some movicol (miralex) to keep at least some functioning. The oxybutynin meds (for bladder spasms) have a very limited affect on her continence. Surely this can't be worth it? But the pead wants us to continue using it, until we see the urologist in December.

We took Boeboe to a child psychologist for a few months. We'll continue next year, as the medical costs for this year has just been heaping up and unfortunately our medical aid (insurance in our country) does not cover it all. The psychologist said she's doing well, but definitely has some lingering issues with regards to self confidence. Which totally makes sense, given her problems and history.

Test results

So we received Monkeyman's blood test results back. Everything came back normal, except his serotonin level. It was something in the low 20's, while it should be something like 27-300+. The pead said it usually points to an iron deficiency, and has put him on iron supplementation. I'm hoping to see an improvement soon! I'm so glad nothing worse is wrong...:)

Boeboe started her medication, we'll see how it goes.

Back to the pead

Well, after getting totally fed-up with the nr 2 accidents, I made an appointment for Boeboe with the pead. We went to see her yesterday. I took both Boeboe and Monkeyman, but more on little monkey later on. She gave Boeboe a check-up, and said that she's definitely not impacted again. So it's not constipation causing the accidents. I told her about occult tethered cord, and she immediately jumped on her computer and searched the term. After reading a little bit, she sounded very interested and I got the impression it made her really, really think.

But in the meantime, she had to try and help Boeboe. She put her on higher doses of Laxette, with movicol, in the hope that it would keep things more flowing. She also prescribed oxybutynin again. Aaarrrgghhh. But she's adamant, we have to give it a try. I agreed. It's the extended release version again, the one Boeboe got last year November. She urged me to go back to the neurosurgeon we went to see in March. She said it will be like re-inventing the wheel to go see a new neurosurgeon. I don't agree, but feel pressured. She spoke to dr W and that was his opinion. The pead was supposed to phone the children's hospital for us, but decided against it until we hear what dr M, the neurosurgeon, says.

Monkeyman...ah, my little baby. I love his quiet, calm, serene personality. I really do. But at some point, about 6 months ago, I realised that it's not normal for a baby of 2 years, to only play little stints at a time, before needing to "rest". He would play for about 30 minutes, maybe an hour, then he'd fetch his "bersie en doedoe" - his blanket and bottle. He'd lay down on the couch, request to watch tv (or not) and just lay for about half an hour to rest. Before playing again. So I took him with to the pead yesterday. She did a whole batch of blood tests, though both she and me think it's his iron. She showed me how extremely pale he is. Not only his face, but his whole body. I'm so proud of little Monkey. He didn't even cry when they drew the blood! I held him literally ontop of me, lying on the bed. And I spoke in his ear the whole time, so he barely noticed what they were doing. I was so immensely relieved.

New to blogger!

So I've reached my limit of how much I can take. I've never been the most patient person, and the site where I hosted my first try at a blog, has let me down. Severely. So I'm moving...to blogger! It's going to take a while moving my posts over, precisely for the reason I'm moving. Because I cannot get onto the server where my blog is! About once a week I succeed in getting on...:-(

So in the meantime, I'm going to start posting on here. Moving the older posts as and when I can log onto the other server.

This has been a trying week. Not just of my patience! We've all had a stomach bug. It started with the youngest 2 kids, an hour apart from each other. Around midnight on Tuesday. Thursday I started, a few hours after me the eldest had it (of course again just after midnight!), and a day later my husband. LOL. What a week! I'm still not through all the washing created by especially the youngest two. Little monkey threw up a full 9 times, in the space of 4 hours. As you can imagine, I was knackered. So going into my own bout of the virus, I had less than zero reserves. That's why it took me about 4 days getting over it.

But we're all better now, and ready to face what the week may bring!

It's going okay with Boeboe. The timer didn't work, she got tired and obstructive and negative with it. In the end refusing to use it. She tried, but couldn't wait more than 1 or 2 minutes before having to run to the bathroom. She just couldn't push longer than her limit. So she's still having accidents. About once a day, though, every now and then there will be a good week, with almost no accidents! So the botox definitely worked, just not as well as we expected or wanted it to. But at least it helps!

School holiday

So we’ve been on holiday for 2 weeks already. Nearly 3 actually. This week, we shipped the eldest two children, Mr N and Boeboe, off to their grandparents. They live about an hour’s drive from us. We’ll fetch them over the weekend again. Our 2-year old, Monkeyman, is missing his siblings quite a bit. But I felt he just wasn’t ready to sleep out, especially not a whole week. He’s still so small, and so attached to me. It’s going well with Boeboe. She’s using a timer, and sets it every time she needs to go to the bathroom. She started off with one minute the first day, then two, then three, etc. before she runs to the bathroom. Thereby stretching the bladder and giving the Botox an even better chance of doing its job. The urologist was positive that this behaviour would help her stop the last accident she still have on some days. Let’s hold thumbs!

Last appointment?

After 8 months of continuous doctor visits and appointments, it seems like we may have had our last one for a while! The urologist is extremely happy with her progress. Instead of 4 or more accidents a day, she’s down to 1 or 2. And the leakage is almost gone. She’s also now dry again at night, after about 3 months of having 4-7 wet nights a week. The urologist said she’s not retaining enough fluid for her to need self catherisation! I’m soooo happy. It was one of my main worries after the botox. That the injections would paralyse too much of the bladder and cause her to retain fluid. The urologist injected 100 units, and said it is a real possibility. The urologist asked us to make sure that she learns now to wait before running to the bathroom. It will stretch the bladder which may improve the last few accidents as well. He’s still sure that after another round of botox in about 6 or 9 months time, she’ll outgrow the bladder problems.
Though, he again mentioned the short filum (tight filum terminale syndrome/tethered cord) and said that it still is a possibility because of her other symptoms. So far, her symptoms are:

• Spastic/hyperreflexive/uninhibited Neurogenic bladder (bladder has Christmas tree shape, with detrusor contractions of over 110) and incontinence
• Constipation and impaction with fecal incontinence
• One leg a tiny bit longer than the other (about 1cm)
• Both feet have high arches (left feet more), though no clawed toes
• Left leg comes out of the hip bone at a tiny bit higher angle than normal
• Leg pain (shins, feet and calves)
• Left foot drop, but only when she’s tired or lazy. It causes her to fall/trip/scrape the toes numerous times a day.
• Left foot turns inwards at the toes a bit (toe-in). Nothing too severe though.

All her leg symptoms are small/tiny/not severe. Just mild. Which makes it difficult to get much attention from the doctors. I feel so sorry for her because she’s always falling and hurting herself, and I can’t help her.
Back to the appointment…the urologist said that I should keep a diary of her leg symptoms and number of times she falls a day. For 6 months, and then come and see him again. He believes that the botox would help for longer than the 6 months, but he wants to keep an eye on her. And then we can talk again about the leg symptoms. He said that even if it is a tethered cord, it shouldn’t do much more permanent damage to wait 6 months. Except if the symptoms gets worse suddenly, in which case we need to follow up asap. But else, we just wait and see. Hopefully he’s right and she’ll outgrow the spastic bladder with the help of the botox calming it down.

One thing that amazes me, is that her tantrums and frustrations have calmed down with the botox as well! A few months ago, I started to wonder if these spasms are painful. And I realised that it may be the cause of her horrible tantrums. It seems I was right, because now that the spasms has calmed down, her tantrums is so much less! Since she’s been 10 months old, she’s been throwing these horrible horrible tantrums that would just go on and on and on… I always thought them a bit abnormal, but everyone else was just suprised that this sweet, tiny, shy little thing is throwing tantrums at all…LOL. Since age 5 I have disciplined her quite hard for tantrums, and now I feel very guilty. Because who would’ve thought that it had a physical origin? The poor thing. I can just imagine how confused, scared and sad it must’ve made her to have all these painful sensations and you don’t know where it’s coming from, why it’s happening or what to do about it. It saddens me no end to think of her as a little girl, being in pain and unable to tell her mommy, and then being disciplined for acting out. How awful.

Urologist visit tomorrow

Boeboe has her check-up with the urologist tomorrow. She received botox injections into her bladder two weeks ago, under anaesthesia. For her uninhibited neurogenic bladder. The doctor is going to check that she’s not retaining any fluid in the bladder after emptying. I’m a little bit nervous, because if she is, it would mean she’ll need to catherise herself. She’s had 2 catherisations before, and both were extremely horrid. She screamed like a banshee that’s being cut into little pieces from the bottom up. With the second one, 3 of us were necessary to pin her down…:-( We were unable to organise a playdate for Mr N, our eldest boy, so he and little monkeyman (the baby brother) will need to tag along. *sigh* Fortunately my husband decided to come as well, so I won’t have to cope with all 3 of them on my own at a doctor’s office.
I’m also going to ask Dr W if the fact that the botox isn’t working 100%, means her neurogenic bladder may not be a developmental problem? I’m still pretty convinced it’s an occult tethered spinal cord. But he’s reluctant to admit it, because her feet problems aren’t “bad enough” accordingly to him. As if falling on a daily basis, isn’t enough…:-( Why do moms these days seem to have to convince doctors that something is wrong with their children? Do they think we want there to be something wrong? Just the thought of my baby having a tethered cord and needing a back operation is enough to make me want to vomit. But should I just leave it be, if that is what I think it is? Because if it is, waiting 2 years to see if botox will “heal” her, could cause irreversible damage…:-(
Well, let’s see what the urologist, Dr W, says tomorrow…

Botox...but isn't that for frowns and wrinkles?

Dr W was very very kind and is a great doctor. By the time we saw him, it was already May. He told us that Boeboe's pressure was so high, no medication would ever help her. And that if we do not help her fast, by age 10 she's going to start learning more control. And instead of the bladder pressure pushing the urine out (causing an accident) it's going to push the urine into the kidneys, causing kidney damage. So we needed to preserve and protect her kidneys.

He said that there could be 2 causes. One is a developmental problem, and then she'd outgrow it after about 2 sessions where they inject botox into the bladder. Secondly, it could be an occult tethered cord. A hidden tethered cord that is not seen on a MRI. For an explanation on what a tethered cord is, read this post: http://roadtosanmichele.blogspot.com/2011/01/tethered-cord-explained.html
Or go to http://en.wikipedia.org/wiki/Tethered_spinal_cord_syndrome or http://www.ninds.nih.gov/disorders/tethered_cord/tethered_cord.htm.

So dr W proposed botox to calm the bladder. It literally paralysis (it's a poison!) the bladder. But only parts of it are injected, so that the rest of the bladder are still able to contract, else self catheterising would be needed. This was done on the 10th of June. Under anaesthesia. It took literally all of 15 minutes! We were so scared and nervous, but she was a trooper. Woke up without any tears, and immediately demanded to stand up and go to the bathroom. The botox immediately stopped all the night time accidents that Boeboe started to have from March 2010. After 3 years of rarely wetting the bed, it became a nightly occurrence. Which stopped the moment she got the botox. Wow. Unfortunately, the botox had less of an effect on the daytime accidents. Only about 50% improvement. Maybe a bit more. It helped, it was worth it. But it didn't work fully.

Monkeyman's birth VI

Once Monkeyman was tucked safe and sound in his crib, sleeping the sleep of the innocent, and I was cleaned up and presentable, Mr N and Boeboe was brought to the hospital to meet their new brother. They adored and loved him from the moment they first saw him!

Meeting Monkeyman

Isn't he the cutest baby ever?

Loving bathtime already

Couple days old and already wide awake!

Getting some gifts from their new baby brother

Me and my 3 gorgeous children

Already in love with my 2-day old newborn

Monkeyman fed every 2-3 hours the first 3 months, and thereafter about every 3-4 hours. He was a quiet, sweet little baby. Rarely cried. He was just fascinated with his brother and sister. Especially his sister's higher little voice. When he heard it, he would kick and wriggle with delight.

Mr N adored his tiny brother

Boeboe just wanted to play doll with him!

Even at only 5 days old, Monkeyman just loved his siblings

I got an infection again in the uterus, but this time antibiotics worked immediately. Unfortunately I also got an allergic reaction to the stitches which took 3 months to heal. At 6 weeks Monkeyman got diagnosed with reflux. The medication immediately took the symptoms completely away. He grew and he became a fat, contend beautiful little baby who met his milestones on time.

He was a tad late with crawling and walking (10 months and 14 months irrespectively) but nothing we worried about.

He was healthy except for getting scarlet fever at 10 months. We had a wild ride with him to the nearest hospital (we were camping outside the city) when we noticed a horrible weird rash on him. He's been having a fever for a few hours, so I worried about meningitis. They drew some blood to rule out some things, and x-rays because he was screaming in pain if anyone just as much as touch his legs (they feared infection in his hips). I asked them to also test his iron, which turned out to be about 1.6!!! Horribly low. He was put on antibiotics, but the hospital's pharmacy was closed (can you believe it!) so we drove off at 10pm at night in search of an open pharmacy. We got completely lost. All the while having 3 very very tired and 1 very very ill child in the car. Fortunately we got back around midnight, administered the antibiotics and within 2 days he was better.

 

After that he was healthy again until age 14 months when he got bronchitis. We thought he was better, although he still had a bit of a cough, but one day he needed x-rays (I thought he may have swallowed a battery, which turned out not to be so). The x-rays showed that he had broncho-pneumonia! So back onto his 2nd course of antibiotics for that. It worked quickly and efficiently.

 

Age 2 he got measles! Even though he had his first injection against it. Fortunately, he wasn't too ill. Just a very high fever for 4 days and then the hectic rash. At least now he doesn't need the MMR injection, which I completely loath to give. Apart from those 3 illnesses, he turned out to be another very healthy child of mine. Like his brother and sister. He is now 3, and just a joy to have in the house. He's sweet, not difficult, rarely throw tantrums. He adores his siblings, and they in turn love him completely.

 

Monkeyman in between Boeboe and Mr N

Cool dude! (Monkeyman age 3)

Monkeyman's birth V

During the night I took some of the pills again when contractions became regular. Every time it worked, making contractions irregular. On Wednesday, I kept on timing contractions all the while going on with life. Fetching the kids from school, visiting with my sister, getting our hospital bags ready and dealing with the builders and contractors. Later on Wednesday, I had the show. The evening and night was rough on me. I didn't sleep much, kept on timing contractions. At 6am Thursday morning, it was 10 minutes apart and very strong. I just knew that this was it. No pill is going to stop these contractions any more. So during the morning, I quickly went grocery shopping for when the in-laws would stay over while I was at the hospital, to look after Mr N and Boeboe.

From there on I went to fetch my husband at work and off we went to the gynae. And as suspected, the little monitor confirmed that contractions was strong and coming every 2 minutes. Nothing was going to stop labour any longer. The strong, burning pain I was getting low on my stomach, was the uterus that started bleeding, most likely along the old caesarian wounds. So baby had to be taken out.

By this stage it was already almost lunchtime. I went home, fetched my bags, organised for my friend to pick the children up from school and off we went to hospital. Contractions were becoming more urgent and stronger. Almost painful...:) It was lovely, to experience all of that again. I really wished that I could deliver normally. But alas, the uterus was already starting to tear and it was only beginning stages of labour. What a pity that someone like me, who do not find contractions really painful, to not be able to deliver normally. While I find the pain of a c-section almost unbearable, but needed them. Ironic.

And then I hit a pathetic anaesthetist! He hurt me so much, administering the spinal. I screamed and I cried. And he said sorry, but he made a botch of that, he'll have to do it AGAIN. And again I screamed and screamed. It was sooooo sore. But, at least the 2nd one worked and immediately my legs went numb. I told the anaesthetist that I'm going to feint. He didn't hear me, and I screamed it at him. Again he didn't hear me. WHY? Because he was busy chatting to the one nurse!!!! So I told my hubby that I'm going to feint NOW. The gynae heard me and interrupted the anaesthetist, who fortunately quickly reacted, injecting me with something that should've stabilised my blood pressure. It didn't work, and he didn't even notice because he was AGAIN talking! So again the gynae called him, telling him and again he injected something. This time it worked and the dizziness got better.

Seconds later the gynae started to cut. She worked quickly, while the anaesthetist had to deal with me being nauseous and feeling totally spaced out and shivering violently. Then, I heard my baby scream. Just once. They lifted him up so that I could see him. It was a boy, and he was fat and white and beautiful. But turned blue and limp as I was looking at him. They handed him to the paediatric nurse who administered oxygen, sucked his nose and throat and then massaged his back. He started to cry. And he cried and he cried. It was beautiful.

Monkeyman gets his first nappy

The gynae told me the placenta was HUGE. Probably due to the baby aspirin. She said that's why I went into labour. There was no space for baby any more with that huge placenta. And she said full-blown labour was imminent, the bottom half of the uterus was thinly stretched. She said I would never have seen another night pregnant. So we did the right thing, doing the c-section.

He was wrapped warmly and put in my arms. So different from my previous birth where I were pushed to my room, all alone. This time, my baby was lying with me, and my hubby walking next to me. I've never been so contend in my life. Until the shoulder pain started. Nothing helped, until they brought me a heating pack. The shoulder pain persisted for about 3 weeks, which was pretty awful. But nothing could bring me down from the high I was on. Baby was beautiful. His blood sugar was a little bit on the low side, but it stabilised by itself within the first day or two. He was healthy, he fed well, he slept most of the time. I loved every minute of being his mom. He weighed 3.06kg, almost 700g less than his brother was, and 400g heavier than his sister.

Monkeyman's birth IV

I was pretty sure the antibiotics helped, but didn't completely resolved the kidney infection. Such a pity. On Monday, I turned 37 weeks, and went to see the dr for a check-up. Baby's stress test looked better, but she sent the urine away for analysis. Like I thought, I wasn't rid of the infection.

On Monday night, precisely 8pm, I got the first contraction. Sharp, strong and pressing the air out of me. I immediately knew it was labour. It was just too strong, too different from normal braxton hicks. I said nothing, since the kids wasn't in bed yet. At 8:30, I had another, and at 9pm another. So it was 30 minutes apart. I told hubby to go to bed, that I'll wake him if anything more happens. I sat in bed reading, timing the contractions. At midnight I tried to sleep, but couldn't. Around 2am that morning, with contractions still only 30 minutes apart, I went to take a bath. It calmed me enough to make me able to fall asleep thereafter. I woke at 6am with contractions coming every 20 minutes. I timed it, but at 8am it went haywire! Suddenly it was every 10 minutes, then every 40 minutes then 20 minutes. I threw my breakfast back up into the loo. Ag, the joys of being in labour...hahaha. I phoned the gynae's office once they opened and the receptionist told me to come in with the next contraction. Which, of course didn't happen! So weird. I still felt “off” though. So at lunchtime the gynae phoned to ask how I am, and told me to come in. It was Mr N's birthday. He had a ball at school. We sent him little packets along to hand out to his friends. Around 2pm his best friend would've visited (with his mom, my friend). So I waited for them, and asked my friend if she'll take me to the gynae. I was again having contractions and feeling super nauseous, so I didn't want to drive myself. So off we went with 4 children in the car. Gynae put me on the monitor and said yes, I'm in labour, but it's still early days. I asked her if it can be stopped, and she said yes, most likely. So she gave me some pills. I was just too scared to have my baby at 37 weeks again. Too scared that his lungs too, would not be ready yet, just like Boeboe's. The gynae thought I was going to go into full-blown labour soon, and that the pills would then not work. But she understood my fear, and besides, it was Mr N's birthday! I wanted them to have unique birthday dates, not share it.

So, back home we went, where my friend visited for another hour or so before heading home. Me and hubby took Mr N and Boeboe off to Spur, to celebrate his birthday. It was difficult, timing the contraction so that I could take a little pill to stop it as necessary, but still be happy and excited for my eldest son. Trying to enjoy dinner all the while being in labour. It's actually funny, thinking back now...:)

Monkeyman's birth III

Just past 32 weeks, baby weighed 2.2kg. I was very happy and relieved about that. The summer heat was starting to get to me. I felt hot and tired and irritated with everyone and everything around me. I've come to the realisation, that it was “good” that I first had complicated pregnancies, and now an uncomplicated one and not the other way round. Only now I realise how really stressful the first 2 pregnancies was. And I would've worried so much more if I knew how it really should've been. How easy and good a pregnancy really should be. I felt like the happiest woman in the world!

At 34 weeks, Monkeyman weighed 2.6kg. Fantastic! Mr N weighed 2.2kg at that stage, and Boeboe was 2.0kg.

The first feelings of fear and worry I had, came just as I turned 36 weeks. I just knew something was wrong. I felt more tired, my back ached something terrible and I felt “off”. Turned out to be a kidney infection and I was put on antibiotics. Baby stopped moving, because the moment he did move, the uterus which were VERY irritated because of the infection, contracted sharply. So baby quickly learned, and stopped moving too much. Poor thing. But quite intelligent...:)

I stopped the aspirin therapy at 36 weeks (so that my blood can thicken up again to handle a c-section) and I couldn't help to wonder if that's why things are going fast downhill now. Dr are worried, and asked me to come in twice a week. She believed baby is going to come early and she asked me to come to her the moment I have any signs of labour.

She put me on the fetal stress monitor, and he was a tad on the quiet side. So she asked me to count his movements. Not again! I couldn't help but feeling stressed about this. Everyone depended on me, to keep baby safe and sound. The doctor, my husband, even Monkeyman! What if I fail again, like I did with Boeboe? With her I thought it was still okay, when she didn't move much. And it wasn't. What if Monkeyman also stops moving and I don't realise it in time?

So I counted his movements, all the while organising Mr N's birthday party. He was turning 7. It was a nice distraction from the worries, and I was surprised when my family and friends threw me a stork party along with the birthday party! It was super nice...:) I never expected it, which made it all the more special. In fact, having more children than the average couple in our circle, meant that I already felt guilty for anyone giving us presents for this baby. So I asked my husband to tell everyone that I do not want a stork party. But they dismissed him, and it was such a surprise. While the men took the children off on a treasure hunt (it was a pirate birthday party!), us women opened all the beautiful gifts.

With the building it was going well. All the walls were up, and the roof was almost done. But, of course they were not going to be finished before the birth. I've accepted it. Such a pity though. Who wants people coming and going in your house, and the hammering and dust of a building site, when you come home with a newborn baby?

Monkeyman's birth II

Nothing! I was so certain that I'm pregnant, how could there be nothing? Just nothing. The seconds ticked on, the minutes went by. Still nothing. It can't be? I was so sure! And then...yes, I was pregnant! The second line appeared. After 3 and a half minutes of agonising wait. Of doubting myself.

I had this contentedness in me. A feeling of peace, happiness and calmness. I immediately knew that everything was going to be just perfect with this pregnancy and baby. I dreamed how he's going to look. He had light, straight hair. A sharp, finely sculptured little face, but very much a "boy's" face. His face wasn't too thin, nor fat. He had a small, straight little mouth with thickish, soft little lips. Red cheeks, wide but thin forehead. A small, thinnish and short little body. He had a happy, naughty little face. A finely intuitive child, with a good sense of humour, and one that wouldn't ever harm anyone else. He was especially in tuned to me and his dad. As if he needed our blessing constantly. He was smiling. A happy, naughty little smile that pulled the soft cheeks upwards.

I was very sure it's a boy. Everything in me knew it's a boy. When I thought of boy names, of blue and green, everything just felt right. When I thought of girl names or pink and softness, I felt nauseous and just knew it was wrong.

We told the children, Mr N and Boeboe. She was only 3, he 6. She just wanted to hold the baby, he understood that it's going to be a long wait. Until he's 7 already.

The first weeks of pregnancy flew by in a haze of nausea and tiredness. I went for a sonar at 7 weeks and we were able to see the little heart beating. At 12 weeks, the gynae did another sonar and told us chances of a down syndrome baby is pretty small. I was relieved. She also determined that the placenta attached to the upper part of the uterus, so we wouldn't have any of the worries we've gone through with the other two with a low-lying placenta. I was very happy about that!

The pregnancy progressed so smoothly. Without any problems or worries. No bleeding, no bed rest, no UTI's, no antibiotics. It was absolutely wonderful. At 13 weeks, I was put on baby aspirin. I had to take a quarter of a disprin everyday, to keep my blood thin and the placenta healthy. It worked beautifully! The placenta grew and the baby grew. The only funny thing, was that the aspirin gave me headaches! Get this...headache pills taken when NOT having a headache, GIVES a headache. Hahahaha. Well, the gynae switched me to ecotrin, another aspirin therapy. It works even better, and no more headaches!

The following weeks went by smoothly. There was just no worries. No UTI's, no contractions, baby grew, I picked up weight, placenta didn't give any problems, baby moved happily. Everything went so smoothly that I couldn't help but just be happy and contend. Except for Boeboe's accidents which just kept on progressing, everything was going well with all my children.

We went forth with the planning of enlarging our home. We got the architect and drew the plans before I even confirmed I'm pregnant. Then the municipality took a whole 3 and a half months to give the go-ahead. We found a builder, paid him the first instalments and he started building just before Christmas.

Building material



Building window-height

Even baby's position was just perfect. Not underneath my ribs like Mr N, and not down low in the pelvis like Boeboe. Both caused severe uncomfortableness. This baby is just there. Happily sleeping a lot, kicking enough but not hurting me and hiccuping just as much as his brother did. Everything was just perfect!
I had such a good feeling about this baby. I'm so happy and contend when I think about him. I know that we as a family needed him, and that he was going to be the middle of our family. The spill around which we're going to turn. I had such a good connection with him already. I knew that he knew me, as I was aware of him. There was such a strong, calm flow of love between us. I just knew that he's going to be a good influence on all of us. Without any upsets.

I kept on commenting on how well it was going with the pregnancy, but it was true and it just amazed me. Some people told me that it was my turn. But I didn't believe that, because then it would've meant it was someone else's turn to have a complicated pregnancy, and I simply couldn't wish that on anyone. So I just enjoyed every minute of having an uncomplicated pregnancy.

Though, even when I know everything was going well, I had this nagging feeling in me that baby was, yet again, going to come early. But it wasn't a fear in me. More like a fact, but not one that scared me. So, even though I believed that he was going to come early, I didn't think he's going to be in trouble, like his sister was.  

Monkeyman's birth I

During March 2007, me and hubby set the ball rolling to enlarge our house. We've always wanted to do it, and it seemed like the perfect time. We were living in a 3-bedroomed house which was open planned with 1 living room and dining room. We loved our house, but it being open planned with 2 children running, laughing, playing all the time around our feet was getting too much. And every time someone came to stay over, we had to move the kids around out of their rooms. So we wanted a spare bedroom and another sitting room which could be closed off to the sound and noise the kids make. Especially when we have guests.


Boeboe and Mr N standing on the foundations of the new rooms

 A month later, my hubby caught me off guard one day. He said we could try for a 3rd baby. I was astonished, and happy beyond belief. As a 5-year old girl, I told my mom that I would love to have 5 children. I was one of 4, but for some reason, I wanted one more than that. If I had my choice, I wanted 3 girls and 2 boys. This yearning to have 5 children stuck with me to this day. Unfortunately, my hubby only wanted 2 children. So when he said we could have a 3rd, I was the happiest woman alive.

On 12th June, at 14:00 the afternoon, I sat at the computer, and suddenly had the strangest, strongest feeling ever. I knew without a doubt, that at that moment, conception just took place. I have no idea why/how I felt that. I just knew it. I was as certain of it as I've been of anything ever. Of course about 10 minutes later I started to doubt myself, wondering why on earth I would've felt that and how silly can one be? I mean, who can know exactly the moment they fell pregnant? I've never even thought it remotely possible. But there I sat, certain that I just became pregnant. I wanted to phone my husband. But what would I tell him? He would most likely laugh at me! Nobody would believe me. It's not possible, is it? I know that I'm more finely in tuned to my body than most people and I've always knew when something was up. And I've been more aware of things during my pregnancies before that I also didn't thought possible. Like knowing how the baby will look, and what gender it was. But that? To know exactly the moment that the waiting sperm entered the tiny, freshly released egg and started the most miraculous process? Who would believe me? Nobody. Even though I knew that I ovulated the night before (I'm always in pain so I know exactly when it's happening), barely 12 hours earlier.

Well, precisely 6 days later, symptoms started. I dreamed the strangest dreams. Weird, stressful dreams. Which mostly included my late mother as well. Just like with Boeboe's pregnancy 5 years before. The next day, 7 days after I believe conception took place, I started with a yoghurt aversion. Just the thought of it made me nauseous. The next day the extreme lethargy, tiredness and low blood pressure started. On day 10, hubby asked me if I was pregnant, when I complained of being nauseous. I told him yes, I might be. I didn't tell him, yes, I'm certain, I've known for 10 days already! I was still doubting myself and that weird feeling of certainty I had. I wasn't even pregnant for 2 weeks (or like the doctors measure it, for not even 4 weeks yet).

Thirteen days after conception, I became very irritated with everyone around me. At fifteen days , the linea nigra appeared!!! I was astonished and nearly jumped through the roof. More than anything else, this was a huge positive sign of pregnancy! I was barely pregnant for 2 weeks! WOW. The linea nigra is the brown line that appears on a pregnant woman's stomach when the stomach muscles starts to pull away because of stretching. Usually from the navel down, and sometimes also upwards. I couldn't believe what I saw. So the next morning I did a pregnancy test and....

On the rollercoaster

The urologist we saw, mentioned that Boeboe may be very constipated, and would need a clean-out. So we took her to the pead in Dec 2009. She took x-rays and said that she indeed is impacted and prescribed movicol (miralex) to clear her out. We put Boeboe in pull-ups and gave her massive doses. It worked well. Almost too well. It was a huge mess. This didn't stop either the urinary or the feacal accidents. The oxybutynin didn't help at all either, it just caused major constipation again, horrible hallucinations and headaches.

Beginning January 2010, we took Boeboe to her orthopeadic surgeon for her yearly checkup. He diagnosed her at age 5 with a few small leg and foot deformities. Nothing serious and still "within normal limits for her age" so he just kept an eye on it. Her left foot had a toe-in, both feet had high arches, her left hip came out at a tiny bit higher angle than it should and her left leg was a tiny bit shorter than the right. On her checkup in January, he said she is doing well, but he was still worried about her issues, so he sent her for an MRI of the brain and lower back.

The MRI's were clear!!! We were grateful and thankful, but puzzled. Everyone, the pead, the ortho and us all thought she had a tethered cord. It would've explained everything. The bladder, the bowels, the constipation, the foot problems, everything.

We didn't know what to do next, so the pead and ortho both referred us to different pediatric neurologists. We went to both of them. The first one laughed at us. He said except for ADD, there's nothing wrong with our daughter. That she certainly was just naughty for weeing in her pants, and that she's lying when she says she can't feel her bowels move. And that I'm enabling her by cleaning her up (WTF?!?!?!). When I mentioned that I can't get an anal wink from her, he laughed (again!) and basically told me to my face, that I'm lying. We walked out of the appointment shocked, hurt, confused and extremely upset. And even more determined than ever to find out what was wrong with our daughter. For not a single moment did we think the neurologist was right. What hurt the most, was that there was a time we DID think she was lying. When she was age 4. But now, at age 6, we've passed that point and knew there was something physically wrong with her.

The 2nd neurologist was much kinder. She did a thorough evaluation, and said that there was just small ADD signs, nothing to worry about (yet). She also couldn't find anything "wrong" with Boeboe, so she phoned a nephrologist friend of hers, who said we must immediately go for a urodynamic study.

This was pure torture.

I lied on her chest, pinning her down, while she screamed blue murder. The bladder spasms continued to press the catheter out, so the nurse had to try so many, many times. And every time it hurt just terribly. But, the test was invaluable, and I'm glad we've done it. The nurse told me immediately after the test, that there was definitely something very wrong with the bladder. It's non-compliant and obstructed, and showed pressures of 110. Apparently sky-high. She gave me the name of a good urologist we should see, so I made an appointment.

The appointment was in March, and the urologist explained the urodynamic test to us. He said she had an uninhibited neurogenic bladder. He explained that when you're a baby, your bladder contracts continuously, expelling urine. That's why babies need diapers. Around age 2, the brain matures and starts to send signals to the S2-4 vertebrae nerves to stop the bladder contractions long enough for the bladder to fill itself to age appropriate volumes (250ml in Boeboe's case). Then only should it contract, when going to a loo with a full bladder. With Boeboe, the bladder started to fill normally and at 30ml already it contracted. At 50ml the contractions were so severe, she was unable to keep it closed. Somewhere along her spine, the signals from the brain to "inhibit" the contractions, got lost. I wasn't getting to the bladder, so the bladder reacts the same as a baby's bladder. The most probable cause is a spinal injury, acquired or congenital (like spina bifida, tethered cord, etc.). The urologist put us on another type of medication, oxybutynin immediate release, and sent us to a neurosurgeon for an evaluation.

The neurosurgeon was kind, soft-spoken and friendly. He told us that her MRI's really was clean, there's nothing he could see that could cause her problems. He said he doesn't believe in a tight filum, especially if it's not seen on MRI. I asked him about this, because in my research I read that sometimes tethered cord was caused by a thickened or tight filum, causing the same symptoms as what Boeboe had. He sent her for an upper thoracic MRI scan, to check for syrinxes or something else that could be at the root of the problem. Again, this MRI came back clear, except for a very vague signal loss in the upper cord. Maybe the beginning of a syrinx? I don't know.

The neurosurgeon said he couldn't do anything more for us. So back we went to the urologist. I told him that the medication made no difference to Boeboe's accidents, so what now. He said her pressures are just too high for medication to work. Her bladder pressure reached 110cm while in a normal bladder, it reaches around 20, maybe 40 when you urinate. In a damaged bladder, it could go as high as 50, causing reflux to the kidneys. Boeboe's was 110!!! He sent her for another VCUG scan, which again was torture. I think he couldn't believe that she didn't have VUG, with such high pressures. They again catheterised her, and this time 3 women had to pin her down, while a 4th, a dr, had to perform the test. The x-rays showed diverticuli and trabeculations, and a narrowed Christmas tree shape bladder neck. This pointed, again, to a neurogenic bladder. A bladder that does not get the signals from the nerves. Fortunately, again it did not show any renal reflux (urine pushed into the kidneys).

The urologist told us that he unfortunately couldn't help her any more. That shocked me. We were beyond help? What now...

He referred us to his colleague, dr W.

To be continued... (in June 2010 posts): http://roadtosanmichele.blogspot.com/2010/06/dr-w-was-very-very-kind-and-is-great.html