update on 16YO son with vomiting (anorexia)

[missjo]

I hope I am not speaking too soon.

 

I will give a quick recap.

 

 

Our 16YO son began seeing Dr. L in July 2011 when she confirmed PANDAS and started antibiotics. After a couple months on antibiotics and only little improvements she felt because of his age and length of time he had PANDAS (15 years) that the next step was IVIG.

 

HD IVIG 2grams per KG over two days in October for typical PANDAS symptoms (tics, OCD, ADD, bed wetting etc). No vomiting at this time. We saw some improvement for about 6 weeks. Bed wetting disappeared and has not reappeared since.

 

Middle of November he began vomiting everything, even water as soon as he would take it in. The vomiting was involuntary with no pain or nausea. He would just walk around and up it would come. He felt fine otherwise. He has always had OCD with healthy food and his weight, with a diagnosis of anorexia at one point.

He has had the involuntary vomiting once before but not nearly as bad.

 

Back to Dr. L December 1st.

 

 

December 2 and 5th lower dose IVIG at 1 Gram per KG over 2 days. I am guessing the lower dose because we are going to do IVIG every 4 weeks for 6 months. Did not seem to help at all.

 

December 6th admitted to hospital by Gastroenterology for dehydration and to investigate what was going on. All test showed nothing. They inserted an NG tube and sent him home after five days.

 

Still vomiting everything but the NG feeds of Ensure at night stayed down. He continued on Clindomycin. His vomiting was not getting better. The Ensure he was getting with the NG tube was all that was keeping him alive.

 

Around Christmas he began to keep very very small amounts down. A little progress but not much. He had not been to school since Thanksgiving and is on homebound.

 

December 29 and 30th HD IVIG at 2grams per Kg over two days.

 

January 1st he started to keep almost everything down and started eating more. As of today he is eating normally and everything is staying down.

 

It seems like the switch has been turned back in the right direction within 36 hours of HD IVIG.

 

Dr. L had reassured us and all of the medical professionals that were working to figure out what was wrong with our son, that as soon as we got whatever infection that triggered this PANDAS exacerbation under control and did the IVIGs that he would be fine. We all had a hard time believing that he would wake up one day and be fine. As of today I am proclaiming that the

 

"IVIG WAS A MIRACLE AND DR. L WAS RIGHT"

 

Dr. L was collaborating with our local gastro Doc, kidney Doc and pediatrician. They all had little knowledge of PANDAS but were amazing in their efforts to understand PANDAS and try whatever Dr. L recommended. We were blessed to finally find such amazing doctors that are willing to accept that PANDAS exist and learn how to treat it.

 

My family has been dealing with PANDAS since our oldest who is now 21 was 2 and this is the first time any of our local doctors have been willing to accept that PANDAS is real and that antidepressants are not the answers. My kids were treated with antidepressants and every other psychiatric medication for most of their lives. I tried for the last 10 years to convince the Drs. that strep seemed to be the culprit of the kids problems, but the local neurologist's insisted it was Tourettes Syndrome, OCD, ADD etc. and that these strong meds were the only answer.

 

 

Praying that he continues to keep everything down and can return to school soon.

 

Melissa

[eljomom]

I PM'd you

[PowPow]

Are you going to continue with IVIG at intervals?

 

so glad to hear this great news! Praying it lasts

[EAMom]

Great update...I too wonder if multiple HD IVIG's should be considered, esp. considering your son's age (older) and symptoms (anorexia).

 

I remember hearing from somewhere (Dr. K?) that PANDAS anorexia is more likely to need multiple IVIG's.

 

I also think it is interesting that LD IVIG didn't help. That is consistent with the observations of other parents on this forum who've tried LD(eg. Peglem).

 

Keeping my fingers crossed that he continues to improve.

[CandKRich]

.

Edited August 12, 2013 by CandKRich

[missjo]

Thanks to everyone. Yes we are planning to continue HD IVIG for a few more months. Has anyone done HD every four weeks for months? I know his first HD IVIG seem to wear off at about six weeks.

Melissa

[missjo]

Thanks to everyone. Yes we are planning to continue HD IVIG for a few more months. Has anyone done HD every four weeks for months? I know his first HD IVIG seem to wear off at about six weeks.

Melissa

[kim]

missjo,

 

I don't have any advice regarding IVIG but so glad to hear your son is recovering.

 

I ran across something and I hope you don't mind me leaving it here in case someone searches "vomiting" and could be helped by it. It doesn't appear to apply to your son, but autoimmune related and mentions brain stem involvement in regards to the vomiting.

 

 

http://www.ninds.nih.gov/disorders/neuromyelitis_optica/neuromyelitis_optica.htm

 

What is Neuromyelitis Optica ?

 

excerpt

 

In the past, NMO was considered to be a severe variant of multiple sclerosis (MS) because both can cause attacks of optic neuritis and myelitis. Recent discoveries, however, suggest it is a separate disease. NMO is different from MS in the severity of its attacks and its tendency to solely strike the optic nerves and spinal cord at the beginning of the disease. Symptoms outside of the optic nerves and spinal cord are rare, although certain symptoms, including uncontrollable vomiting and hiccups, are now recognized as relatively specific symptoms of NMO that are due to brainstem involvement.

 

The recent discovery of an antibody in the blood of individuals with NMO gives doctors a reliable biomarker to distinguish NMO from MS. The antibody, known as NMO-IgG, seems to be present in about 70 percent of those with NMO and is not found in people with MS or other similar conditions.

[T_Mom]

FANTASTIC news Missjo!!! Praises for Dr L ...

 

[3boysmom]

I didn't realize that Dr. L did IVIG. When we saw her a few years back, she was sayin, PEX ( plasmosphorisis..... Spelling?). So glad he is doing well- this is a cruel illness!

 

God bless your son for his long journey!