Tuesday, November 30, 2010

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 2nd 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.

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