Gotta question

[sixpack]

As you may know, my daughter, Lindsay, has multiple disabilities due to a brain abnormality. It can cause numerous problems including endocrine issues. As an infant, she was monitored and was fine. She went through puberty without any endocrine problems. Although she did finally start having seizures at 13. My guess due to her period/ovulation.

well about 4yrs ago she lost about 15 lbs over a one year period. She started about 123lbs and went down to 105. I had all of the bloodwork done to find a cause. All was good. We struggled with her weight. We started her on periactin to increase appetite and weight gain. We got her to hover around 115 range. But we always have to watch it. Sometimes she won't eat and other times she eats like a horse. You'd think the whole weight loss/gain would be around that, but sometimes even eating like a horse, she doesn't gain.

Okay so end of August took her to doc for bloodwork again. Doc says thyroid low (which seems weird to me). We put her on thyroid but I make an appointment to see endo. Today was the day. He says to stop taking thyroid cuz it really isn't low enough to warrant it and that all the other bloodwork looks very fine and that weight loss/appetite loss etc really not because of any apparent endo probs. We will still have some more bloodwork in Jan to monitor.

My question is could all of her seizure meds be causing appetite or overeating probs. Or general weight loss or gains. Or could seizure activity in general cause these wild weight flucuations.

To see what I mean------Just these last few weeks we've gone from 112 one week to 117 to 122 then 115 to this week at 118!! AND she's been eating like a crazy person. Honestly she should be 150!!!

I was really hoping the endo would have some answer for me. We've just been battling this for four years and would like an easy answer for onceonder:

Well any insight here???? Or are you guys just as perplexed as me?????

 

[epileric]

I've found that I'm more likely to provoke a seizure when I go hungry.

Of course any stress on the body can provoke seizures so it is possible that the constant weight change is what is provoking seizures.

My understanding is that the ideal diet for someone with seizures is 6 small meals spread throughout the day. I have trouble doing that but I do notice that when I avoid having just 1 or 2 huge meals throughout the day that I'm less likely to have seizures.

 

[drarvindr]

Usually seizure meds cause weight gain ( i'm a case in point) . And hypothyroidism causes weight gain and lethergy , an unusual diagnosis in an ADHD ,epileptic , thin child. I'd avoid the guy who gave you the thyroid as in my opinion , he's a moron. What medications is she on for the ADHD ? amphetamines could cause weight loss. It depends on the drugs she takes. gimme a list and i'll look into it. I'm assuming the blood work ruled out the worse diagnoses. let me know. ope she gets well soon ,

 

[sixpack]

Hiya doc,

Lindsay doesn't have ADHD. She has the seizures along with the unilateral schizencephaly and optic atrophy. She is multipli-handicapped that includes autism, motor, vision, language disabilities.

Her primary dx'd low thyroid in Aug--her t4 was .8 and TSH was 1.28. His thinking was that the thyroid was low so TSH should be higher than 1.28. ANyway thought I'd run it passed an endo. The endo didn't think it warranted meds but to monitor since her brain abnormality often interferes with endo system. On 10/22 her t4 was 1.0 and TSH was 1.23.

She is presently on:
1800 trileptal, 3000 keppra and since 9/29 1000 depakote er daily
20 mg of Geodon for behavior--that's down from 80mg of a few years back.
multi-vitamin
300mg of B-6 as keppra tends to deplete that
Seasonique (BCP) for ovulation/menses type seizures.---10/26

Recently removed meds
clonidine (for sleeping)---ended it this summer.
periactin--for weight gain and appetite stimulant--ended it 9/08 as wasn't working.
levothyroid.

All the docs know her meds etc. Her neuro is very careful to prescribe weight 'neutral' meds or the type that cause weight gain.

When she first started the weight loss she was on geodon, trileptal and lamictal, clonidine. Ended up changing out the lamictal for zonegran (she promptly lost 4 pounds) so changed out zonegran for keppra.

All bloodwork showed very good numbers. As the endo said 'nothing was out of whack'. the endo wants to check everything again in Jan. Primarily Vitamin D. Depakote can cause probs and want to check to make sure her bones are safe.

Thanks

 

[drarvindr]

I'm so sorry abt the ADHD assumption. i had you confused with another member ( you didn't repeat the history in the first post so didn't connect . REALLY APOLOGISE !).The drugs seem ok. geodon and keppra have a history of causing visual problems. Depakote BCPs and clonidine cause weight gain. was her blood pressure high? clonidine has a side effect of sedation and im not sure this is it's primary use. did you try other things to help her sleep that failed? The periactin has an effect of both sedation and appetite promotion. Levothyroxine increases you appetite and BMR. if her free t4 was 0.8 (borderline low) and TSH was 1.28( nrmal) , the endo is right. The TSH is a bit low. For someone who's thin no matter what she eats i would have expected a high thyroid level with low TSH or low t4 with very high TSH . If the bloodwork is all normal i honestly am not totally sure about a diagnois
here's a few questions that may help:

1) she was on clonidine , which is primarily an antihypertensive. if her BP was high you should look into adrenal causes . get a serum cortisol level if you haven't already. If it's normal - dead end 1
2) You said she has schizencephaly. there is a possibility that the cleft is pressing on her pituitary and causing fluctuating corticotropin levels , which can account for weight fluctuations. it could also be the cause of the thyroid levels. If you have done a recent MRI which was clear then there's no need to waste money on another one , but if not you should get one.
Hope she gets well soon. Write if you need any help.

 

[sixpack]

Okay you've got some good info here. No probs about the ADHD I totally understand trying to keep everybody seperate.:bigsmile:

regarding the t4/TSH-- yes her primary doc thought as you---if the t4 free was borderline low the TSH should be much higher because it would be hollering for the thyroid to produce more. That's why he started her on levothyroxin. THe endo didn't think she needed it but to monitor anyway. Endo also mentioned that aed's can make thyroid numbers harder to read. I specifically asked the endo if she could be having adrenal issues. He said, based on her complete Metabolic panel and how she 'looked', that it was unlikely she had adrenal probs. But in January endo wants to do TSH, t3,t4 total, t3 uptake, cortisol, total serum, and vitamin d, 25-hydrox LC/MS/MS

re clonidine--we put her on it for the sedation only. Her BP is normal to low. Yesterday it was 115/60 without clonidine. Last week at neuro it was 97/67. She was on clonidine for about 5yrs, maybe. Lately it wasn't helping her sleep and was afraid to raise the dosage because it may lower BP too much. So we took her off in early August. That's the only med we've tried for sleeping. Autistic kids often have trouble sleeping so that's probably the answer there. She's had this issue for her entire life off and on.

Her last MRI was March '07 (her weight probs started about Summer '04). At that time nothing other than the schizencephaly with a narrow open lip showed up. Well her septum pellucidum was absent. The neuro wants to do another MRI around March '09 possibly to see if there is scaring due to the increase in seizure activity. That hasn't been set in stone as yet.

The August bloodwork up was:
Q-comp Metabolic Panel
Q-TSH, 3rd generation----showed 1.28
Q-lipid panel
Q-T4, free----showed 0.8
Q-CBC w/diff & platlets

I really appreciate your input. My girl is quite the puzzle.onder: On the bright side she was a real champ for her pelvic ultrasound this morning. She had that instead of the usual pelvic exam to make sure all the girl parts were healthy so she can take BCP.

wow this is a long post:bigmouth:

 

[drarvindr]

About the sleeping you may want to try antihistaminics. The various brand names are Atuss HD, Atuss HS, Cordron-HC, Cordron-HC NR, Histinex PV, Hydrocof-HC, Hydrotuss HC, Hyphed, Notuss-Forte, P-V-Tussin Syrup, Pediatex HC, Q-V Tussin. They usually put you out like a light !:gnite:.
Septo-optic dysplasia ( absent septum pellucidum, optic atrophy..)is a common association with unilateral schizencephaly. It's called de Morsier syndrome. It's one of the causes of hypopituitarism and explains the abnormally low TSH. You should consult your endo in the meantime. She is quite a puzzle let me know how things go.

 

[sixpack]

when she was a babe, we were told that the septo-optic dysplasia would or could cause endo probs. I looked up the syndrome and find that she 'could' have several of the hypopit symptoms. Not really with growth as she is 5'7 pretty tall. Her menstural cycles are mostly regular. Only this month was she three weeks late and that was likely due to a med that had progestin in it. We've since discontinued it. her abnormality certainly opens her up to secondary hypopit. I called her neuro today and he says that in order to have hypopit many of the endocrine systems would be involved. The endo dr doesn't seem to think anything is amiss. However he will rerun tests in Jan. Her neuro is in agreement with that as well. I have a gut feeling that we'll get this dx eventually though. As I read about hypopit, it said it often takes years for a dx because the symptoms creep up slowly.

Thanks for your input. I feel this will be the ultimate answer.

So as I type this she is finishing a full second plate of a fish/rice/lima bean dinner. The hungry little chick.