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.