Need Solid Advice for a Sweet Little Boy

Friends, and especially those who are in the medical and science fields. I have a really cute little step son, he is 8 years old, and he has Spina bifida. We believe his condition was caused by his mother
taking Depakote for a seizure disorder coupled with Bi-Polar disorder. As one can easily discover with a simple search, the drug now has a Black Box Warning on it, and the drug is known to cause birth defects.
Birth Defects and Depakote Use

She took the drug all during her pregnancy with her first child, then when she got pregnant again, she was taken off the drug, with no explanation. The little boy was delivered by C-Section, and him and his mom almost died, she came near to bleeding out. The oldest boy has some mental and developmental problems, but is pretty healthy for now.

That being said, our little boy has many problems, but this one has us, and his doctors stymied, and we need some understanding on it. He loses his body heat. No matter the weather, or how many clothes he has on, he completely loses body heat just like Hypothermia. I have seen his temp below 96 degrees on several occasions. After warming up a little, he seems OK, but of late he has developed other symptoms. He get nauseous, throws up stomach acid, then his temperature rises to a fever pitch. (101 degrees) He gets confused, and is visably sich when this happens, and it has been coming more often of late.

I know we have medical personnel in this forum. This is a cry for help, people. If anyone knows anything that may help us, please reply.

Very sorry to hear about this and my very best wishes to your step son. Hopefully, something will come from your searches.

I cannot help, but I am wondering if the doctors have given you any clues to what they are thinking? You mentioned they are stymied, but have they hypothesized at all? Even the outlandish? I ask, since that may be a place for others to start looking... Is there anything you can think of that you didn't mention?

Good luck to you, I hope you find your answer.

Goodness, So sorry to hear of this little ones struggles, And i hope you find the answers,

Have they checked his liver and kidney functions? as i understand that can be a cause for loosing body heat?

I wish his and your family well and hopefully the little one improves quickly,

Keep us updated,

I'm no Doctor, i must concede this, but i feel my background and experiences and my personnal opinions concerning developmentally dissabled children may be of some use to you and your family and friends.

My "proffesional" medical background is:
1986 thru 1998: Worked as a CNA (certified nurses assistant) at an IIlinois's Skilled Care Facility for Developmentally Dissabled that usually had a census of 48 - 104 clients with numerous and various developmentally dissabled diagnosises.
1998 thru 2009: EMT national regestered United States Air Force Firefighter trained to the levels of Fire Officer 2, Fire Inspector 2, and Fire Instructor 2, with dozens of other various certifications dealing with fire sciences and military requirements.

My advice is as follows, and i hope it serves you well.

1 - Keep a loving and positive environment. Re-enforce positive behaviors and be happy.
2 - Listen to the proffesionals of their respected fields of study.

3 - FIND A GOOD ROLE MODEL who demonstrates overcoming adversity AT A SIMILIAR disposition.

I like to use STEVEN HAWKING as a great example. The Doctors gave him so long to live back in the 70's i believe, and he is still around, and at a global view still relevant in his respected field of study. He achieved what the docs said was more than unlikely.

It's been my personal experiences having worked with children with dissabilities for over a decade that it can be very emotionally taxing, but equally rewarding. By some peoples' standards they may be "slow", but the truth of the matter is there is much we can learn from them.

I'll keep an eye on this thread and flag it. I have good ideas now and again, and i might have some ideas for you in the future. I'll give it some thought. I know in most cases it takes a village, even with "regularly functioning" personalities.

As for the temperature issue, i can't remember the name of the part of the brain that regulates temperature, but that may be a neurological conditioned, maybe, maybe not related to his condition. I am familiar with working with such a condition, and keeping the room warmer was the main thing we did while working in the hospital. But, I would think some medical advances have been made in the last 10 years that may offer your 8 year old some help.

Best Regards,
John Paul

Edited to add: GET BLOOD WORK DONE AT DOCTORS

[edit on 18-4-2010 by Esoteric Teacher]

reply to post by autowrench


It sounds like neurological storming, though it is usually seen after traumatic brain injury, that is not always the case.

Not to scare you, but since he does have some medical issues, paroxysmal sympathetic storming sounds just like this, especially with his altered mental status during the episodes. I would consider a visit to the doctor ASAP, because he could have a little bit of hydrocephalous going on. He could even have some normal or negative pressure hydrocephalous. These last two do seem connected to spina bifida.

Especially with spina bifida, the nervous system is somewhat exposed, and it would be prudent to get him checked ASAP by a neurologist, simply to be on the safe side, and rule out the posibility of infections or injuries.

You said this has your doctors stymied? Have they done a CT to check him out? How about an EEG?

My prayers are with you, please do keep us posted.

I'm watching a show on the "SCI" channel which i presume is the science channel.

The name is of the show is "REAL SUPERHUMANS/FUTURE FANTASY"

They are doing a segment on a Turkish painter who was born without eyes, and has never "seen" light of any kind. Yet, he paints beautiful paintings of landscapes and scenery with 3-demensional aspects and accurate representations.

The mind is truly an amazing thing, life is capable of overcoming and using obsticles as catalysts for opportunity and success, in my opinion.

Ah, I also wanted to ask, if you don't mind, has he been evaluated for a Chiari Malformation?

If not, I would also suggest requesting this if and when you pursue a CT or MRI.

Chiari II anomaly — A structural abnormality of the lower portion of the brain (cerebellum and brain stem) associated with spina bifida. The lower structures of the brain are crowded and may be forced into the foramen magnum, the opening through which the brain and spinal cord are connected.

medical-dictionary.thefreedictionary.com...

Hi this thread really hit me and the post from the nurse is amazing I was just going to say put a cold cloth on your sons head rub his back make sure he's confortable talk him to sleep. When i was little i remember i got really sick but my mom couldn't tell she thought it was the flu and I remember distinctly wakeing up and everything was out of proportion I was "confused" because I felt tiny and everything was HUGEEE like I had absolutely no depth perception or it was right off. felt like I was this huge gravity field and everything sunk towards the middle of my field of view. My mom just did her thing rubbed my back talked me to sleep made sure i was alright and I got through it i've never experienced anything like that again I honestly haven't been puke sick since I was like 14 ish i'm 20 now.

I'll do my best to help.

Regarding birth defects and Depakote:

Divalproex sodium (Depakote) is ranked as a category D by the FDA. This means:

There is positive evidence of human fetal risk, but the benefits from use in pregnant women may be acceptable despite the risk (e.g., if the drug is needed in a life-threatening situation or for a serious disease for which safer drugs cannot be used or are ineffective).

As far as the specific birth defects caused by Depakote, this is what is listed in Micromedex/Drugdex (the pharmacy software we use in the hospitals):

a) As valproic acid can be teratogenic and cause congenital malformations such as neural tube defects, consider use of valproic acid or its salt form, sodium divalproex, in women of childbearing potential only after the risks have been thoroughly discussed with the patient and the potential benefits outweigh the risk of injury to the fetus. This is particularly imperative when treating a spontaneously reversible condition which does not bear a risk of permanent injury or risk of death (eg, migraine). In cases where the severity and frequency of the seizure disorder may permit removal of the drug without posing a serious therapy to the patient, clinicians may consider discontinuation of the drug prior to or during pregnancy. Where exposure is unavoidable or unanticipated, the pregnant mother should be advised of possible consequences to the fetus. Screening for neural tube defects is recommended and clotting parameters should be routinely monitored (Prod Info DEPAKOTE(R) ER extended-release oral tablets, 2006; Prod Info DEPAKOTE(R) oral sprinkle capsules, 2006; Prod Info DEPAKOTE(R) delayed-release oral tablets, 2006a; Prod Info DEPACON(R) IV injection, 2006; Prod Info DEPAKENE(R) oral capsules, oral syrup, 2006). As general population studies have shown that folic acid supplementation before and during early pregnancy reduces the risk of neural tube defects, folic acid prescription drugs should be considered in women of childbearing potential who are receiving valproate sodium (US Food and Drug Administration, 2009). Infants born to mothers treated with valproate during pregnancy should have blood glucose levels monitored during the first several hours of life (Ebbesen et al, 2000). Encourage enrollment in the North American Antiepileptic Drug (NAAED) Pregnancy Registry (1-888-233-2334) for any woman who becomes pregnant while on valproic acid therapy (US Food and Drug Administration, 2009).
5) Literature Reports
a) Data collected from the North American Antiepileptic Drug (NAAED) Pregnancy Registry revealed 16 cases of congenital malformations (i.e., neural tube defects, craniofacial defects, cardiovascular malformations, and other body system malformations) to infants born of pregnant women (n=149) exposed valproate monotherapy (average doses of approximately 1000 mg/day [range 500 to 2000 mg/day]) during the first trimester. The prevalence rate of birth defects was 10.7% (95% CI, 6.3% to 16.9%). Neural tube defects occurred in 2% of the infants (n=3/149) while 4% of the infants (n=6/149) had less severe malformations. In women (n=1048) exposed to other NAAED monotherapies, the malformation rate was 2.9% (95% CI, 2% to 4.1%). Congenital malformations in valproic acid-exposed mothers was 4-fold higher compared to those treated with other NAAED monotherapies as a group (odds ratio, 4.0; 95% CI, 2.1% to 7.4%) (US Food and Drug Administration, 2009; Prod Info DEPAKOTE(R) ER extended-release oral tablets, 2006; Prod Info DEPAKOTE(R) oral sprinkle capsules, 2006; Prod Info DEPAKOTE(R) delayed-release oral tablets, 2006a; Prod Info DEPACON(R) IV injection, 2006; Prod Info DEPAKENE(R) oral capsules, oral syrup, 2006).
b) Data collected from the Antiepileptic Drug (AED) Pregnancy Registry for over 3000 pregnant women exposed to AEDs included 123 completed pregnancies exposed to valproate monotherapy (Holmes et al, 2003). The prevalence of birth defects was 8.9% in this subset compared to 2.8% (relative risk (RR) 3.5; 95% CI 2 to 6.2) of women exposed to monotherapy with other AEDs and to 1.6% (RR 6; 95% CI 3.5 to 10.2) of an external comparison group. Anomalies reported in order of frequency were cardiac, neural tube, hypospadias, polydactyly, bilateral inguinal hernia, dysplastic kidneys, and club foot. Similarly, a separate retrospective cohort study (n=1411) showed an increased risk of major congenital abnormalities in the offspring of women treated with either carbamazepine (RR 2.6) or valproate (RR 4.1) monotherapy during the first trimester of pregnancy (Samren et al, 1999). Risk associated with valproate was dose-dependent. Valproate alone and in combination with other AEDs were associated with an increased risk of neural tube defects (RR 4, p=0.03; RR 5.4, p=0.004, respectively). The risk of hypospadia was similarly higher in the monotherapy and combination therapy groups (RR 4.8, p=0.05; RR 4.8, p=0.03, respectively).
c) Numerous cases have been reported of fetal neural tube defects, primarily spina bifida, and/or cardiac defects (eg, tetralogy of Fallot, patent ductus arteriosus, valvular aortic stenosis, and ventricular septal defect). There is an increased incidence of neural tube defects with exposure during the first trimester of pregnancy. Risk of spina bifida in children of women exposed to valproic acid during pregnancy is estimated to be 1% to 2% by the CDC. While the American College of Obstetricians and Gynecologists estimates the general risk for congenital neural tube defects to be 0.14% to 0.2%, data from the Antiepileptic Drug (AED) Pregnancy Registry showed that neural tube defects occurred at a rate of 2% (n=3/149) (Prod Info DEPAKOTE(R) ER extended-release oral tablets, 2006; Prod Info DEPAKOTE(R) oral sprinkle capsules, 2006; Prod Info DEPAKOTE(R) delayed-release oral tablets, 2006a; Prod Info DEPACON(R) IV injection, 2006; Prod Info DEPAKENE(R) oral capsules, oral syrup, 2006; Ardinger et al, 1988; Bertollini et al, 1987; Jager-Roman et al, 1986; Bailey et al, 1983; Jeavons, 1982; Robert & Guibaud, 1982; Thomas & Buchanan, 1981; Clay et al, 1981; Dalens et al, 1980).
d) Various other reports of fetal abnormalities resemble those seen in fetal hydantoin syndrome, including craniofacial and skeletal or limb defects (Prod Info DEPAKOTE(R) ER extended-release oral tablets, 2006; Prod Info DEPAKOTE(R) oral sprinkle capsules, 2006; Prod Info DEPAKOTE(R) delayed-release oral tablets, 2006a; Prod Info DEPACON(R) IV injection, 2006; Prod Info DEPAKENE(R) oral capsules, oral syrup, 2006; DiLiberti et al, 1984; Jager-Roman et al, 1986; Ardinger et al, 1988). It is not clearly established, however, whether these anomalies constitute a fetal valproic acid syndrome or are the result of other factors such as genetic or environmental factors, combination therapy with other anticonvulsants, and/or seizure episodes during gestation. A case-control study in which 57 of 22,294 malformed infants and 10 of 21,937 control infants were exposed to valproic acid estimated a risk for limb deficiencies to be about 0.42% (Rodriguez-Pinilla et al, 2000). The same analysis calculated an odds ratio of 6.17 (CI, 1.28 to 29.66, p=0.023) for limb deficiencies after first trimester prenatal exposure to valproic acid. The types of limb deficiencies reported included overlapping digits, talipes, clubfoot, clinodactyly, arachnodactyly, hip dislocation, and others.
e) The relationship of first-trimester plasma antiepileptic drug (AED) concentrations and pregnancy outcomes in 427 exposed women was assessed, including 44 women on valproic acid monotherapy (Canger et al, 1999). Valproic acid showed a significantly higher rate of malformations (p less than 0.02) compared to monotherapy with other AEDs such as primidone, carbamazepine, phenobarbital, phenytoin, and clonazepam. In addition, the mothers of malformed fetuses used higher doses of valproic acid during their first trimester than did mother of nonmalformed fetuses.
f) Twenty-two infants with in utero exposure to a median daily dose of 1 g valproate in the first trimester and 1.2 g during the third trimester were described in one study. In 13 of the 22 infants, blood glucose dropped below 1.8 mmol/L, with the first hypoglycemic episode occurring within 1 hour of birth in 7 infants and within 2 hours in 3 infants. Ten of the infants exhibited withdrawal symptoms within 12 to 24 hours including irritability, jitteriness, hypertonia, seizures, and feeding problems (Ebbesen et al, 2000).
g) Other reported fetotoxic effects include a case of an infant with afibrinogenemia who died of hemorrhage, and a case of hepatic failure that resulted in the death of a newborn infant.
h) If phenytoin or carbamazepine (or any prodrugs) is used in pregnant women, there is a substantially increased risk of teratogenicity with many combinations of other anticonvulsants. The teratogenicity of these drugs is largely or wholly related to the levels of the reactive epoxide metabolites (Buehler et al, 1990c; Van Dyke et al, 1991c; Finnell et al, 1992c). The epoxide/parent drug ratio is generally increased when phenytoin or carbamazepine is combined with each other, any other drugs that induce cytochrome P450 enzymes, or drugs which inhibit epoxide hydrolase, such as valproic acid, progabide, and lamotrigine. Such combinations increase the risk of major birth defects 3- to 4-fold over monotherapy and about 10-fold over background rates.

**

If his regular doctors cannot help ease his symptoms, I would recommend seeing a highly skilled naturopathic pediatrician or physician, who is also skilled in homeopathy, who could at least help his nausea/vomting and body heat problems. Homeopathy is often very helpful in relieving general symptoms of chronic illness, but it is also very gentle, safe, and non-toxic.

I hope he feels better soon.



[edit on 18-4-2010 by nikiano]

this is almost defiantly an issue regarding his serotonin levels. I don't know what serotonin receptors is is that controls body heat, but I wouldn't be surprised if other issues arise. I'm not a doctor, just a fan of brain chemistry, I don't know how to help you, but I hope this leads you in the right dirrection.

What a heartbreaking situation, and kudos to you for doing everything you can, including soliciting advice here.

You've probably already done this, but I would suggest having him seen at a major research hospital. I don't know where you're located, but it would probably be worth a bit of travel to make sure that he has access to specialists and equipment that local hospitals and doctors' offices may lack.

I also like the idea of taking him to a naturopath, as long as they don't do things that actually contradict the doctors' advice.

Best of luck and good wishes to you and your stepson!

reply to post by autowrench


Autowrench.....

I think the boy needs to see:

- A paediatric endocrinologist

- A paediatric neuroradiologist

This is because I think you need to check for:

- Abornormalities in the endocrinological aspects of the hypothalamus & it's control of the anterior pituitary gland

- Any structural issues pertaining to the hypothalamus & the anterior pituitary gland.

Also.....

When are the episodes more prevalent?

For instance, does it happen more after the boy has been eating?

Kind regards
Maybe...maybe not

[edit on 19-4-2010 by Maybe...maybe not]

Hi all I'm new here and I wanted to reply to autowrench post.

Autowrench made a post about his stepson. Well his stepson is my son. I will tell you all a little more about my son.
As you know I was taking Depakote when I got pregnant with my first son and the doctor kept me on the Depakote but when I found out that I was pregnant with my second son the doctor took me off of the Depakote with no explanation at all. My son is a dwarf. I didn't know when I was pregnant with him. Then the doctor asked me if anyone in my ex husband's family or my family was a dwarf and we said, "no why." The doctor said" I think your son is a dwarf, but I want him to go to a doctor at the Shriner's Hospital. So they need to do some test on him. So, we got an appt to go to Shriner's hospital. The doctor came in and told me how they do the testing and he told me that there are two different types of dwarfism. I go o.k., which one do we want my son to have? He said "the one that we want your son to have is Achondroplasia, and not Hypochondroplasia." I go o.k. what is the difference in them. The doctor said "Achondroplasia is where his legs and arms are shorter then his trunk area and the Hypochondroplasia is where your son will have to get water drained on his brain." Then my ex and I found out that he was Achondroplasia. Then he had a lot of ear infections and then they put tubes in his ears. We got that done and over with, and found out that he needed to have surgery done on both of his legs. I said "o.k. lets do this." So, they did surgery on his legs and he came out of it fine. Then the doctor told me that my son has a hole at the base of his neck and that they would have to keep an eye on it to make sure it don't get bigger or that it don't pinch off the nerves in his neck. The doctor told me that my son might have to have more leg surgeries done. Well, I know that my son will need another surgery on his legs... but this time it is just one leg instead of both of them. I told my son that he can make the choice of having the surgery or not.

Someone asked when he loses his body temp? He loses his body temp in the evening or about 7:00p.m. There are times where he throws up, runs a temp, and can't get enough to drink. (always thirsty) When this happens, he can't go to school the next day; because he is still trying to get his temp back. This last time wasn't so, bad. The time before this one he had a temp, then he was cold, wanted something to eat, but didn't eat it and wanted something to drink and didn't drink it. He couldn't go back to school until Wednesday. This time he just missed one day of school so, he will be going back to school on Tuesday.

I want to THANK ALL OF YOU FOR HELPING US OUT!!

I second Maybe...Maybe Not that a pediatric neurologist is probably a good bet. The Hypothalamus is the part of the brain that regulates body temperature so may be involved somehow.

Best wishes for you and your son.

This is not expert advice but off hand Skull Cap, Alpha Lipoic Acid, 12.5 mg iodine tablets, nitrous oxide tablet (1/4 of one weight lifters tablet) or perhaps metanx (www.metanx.com...) or something like it. Calcium/Magnesium/Phosphorous, "Cell Food" / Silica Food, water treated with "Precious Prills".

Skullcap in Glycerin Tincture (no alcohol, bad for the nerves),
A few other possibilities --
Black Seed Oil (Nigella) and Peppermint Oil,
Lakhovsky Coils starting with a thick insulated copper coil around the waist (integrates the subtle body (blue print) with the physical),
Bach Flower Remedies - perhaps start with the rescue remedy
Homeopathic Arnica Montana rx Homeo is a good source.

Because of it wide range of benefits you might look at Gynostemma. herbal-powers.com...

Has he ever had a CT scan done of his head and did they look for defects of the hypothalamic-pituitary tract.

Does he have any other disorders.
Other hypothalamic disorders can include sexual abnormalities (such as premature puberty), psychic disturbances, obesity, anorexia, temperature regulation disorders, sleep disorders, and disruption of normal circadian rhythms.
They also need to check the corpus callosum.
As this can also be seen in Agenesis of the Corpus Callosum or Partial Agenesis of the Corpus Callosum

reply to post by autowrench


re: the body heat, im not a medical person, but have you tried a good chinese doctor to see if they think they can help him?

if nothing else is working it might be worth a shot.


maybe also try to make sure he's not deficient in any important nutrients or minerals. e.g. he's getting enough magnesium, selenium, iodine etc.

magnesium baths are a good way to ensure you have enough magnesium, you can buy sea mineral magnesium to put in the bath.

brazil nuts have selenium; and nuts and seeds of different types have a lot of nutrients that the body needs.

iodine is found in different types of seaweed; or a couple of drops of lugol's solution, but seaweed is a safer option. be very CAREFUL with lugol's solution as iodine is toxic if you have too much. i wouldn't take it all the time = seaweed better.

is he eating lots of fruit and vegetables every day? to get enough vit c and other nutrients?

good diet can support the immune system which might help; as well as general health. i would get rid of red meat and dairy. only eat organic chicken and fish - but be careful of mercury levels in fish... and eat organic free range eggs.

beans, chickpeas, lentils, etc are good alternative sources of protein.
i would drink soy not milk, or ricemilk instead.

i would totally eliminate all junkfood, processed or fast foods; and all soft drinks, lollies and sugar. brown sugar is beter than white, and stevia or maple syrup or honey is preferable; and it should be a rare treat not everday thing.

i would drink wheatgrass; and look into chinese herbs to support the body's general health and well being. maybe acupuncture could have benefits == as it's said to regulate the body's energy system. if your enegy system gets run down you can die apparantly.

this is general health info, but given the temperature issues, maybe there is some important nutrient or vitamin lacking?? maybe ensure as healthy as possible and support immune system then see if it still recurs?

[edit on 20-4-2010 by rapunzel222]

Just read that apparantly getting enough folic acid (folate) in diet can reduce severity of the defects assoc with spina bifida. (the drug/valporic acid that you said caused the birth defect has the effect of stripping the folic acid away - and taking folic acid before birth can reduce symptoms; it also reduces symptoms of kids wiht spina bifida. i think this indicates taht getting enough folic acid could be important part of a solution.

(i would get enough calcium too but only via eating figs/sardines etc. NOT via dairy products.)

again getting enough folic acid is important part of healthy diet - lots of leafy green vegetables etc. check out what foods have folic acid in them - and eat lots.. organic foods. i dont recommend crap foods like white bread and milk that just have it added to them. better to get it via a natural food source.

sources folic acid - beans, vegetables - leafy, fruits, whole grains (BROWN rice etc).

linklink

i would make vegetable protein - from beans, chickpeas, lentils, nuts, seeds etc the main source of protein... (occasional egg/fish is probly ok few times a week).

[edit on 20-4-2010 by rapunzel222]

LINK TO INFO ON VALPORIC ACID LINK



[edit on 20-4-2010 by rapunzel222]

[edit on 20-4-2010 by rapunzel222]