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Does anyone have a child that was treated with IVIG after a year of on


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I am wondering if IVIG/Plasma exchange has been an affective treatment for a child with an onset of PANS/PANDAS that was not diagnosed within a year of onset. My ds son has had many symptoms developed since his illness . His illness started in 2010 and these PANDAS antibodies were found highly elvated in October 2013. Symptoms that have started with the illness include the following: headache, scalp pain, loss of muscle control, could not sit without help for several months, rolling back and forth, tremors in arms and legs, low blood pressure, high heart rate,long term memory problems, hoarse voice, rashes on face come and go. Currently my ds is wheelchair bound and I thankful for the strength he has to be able to transfer in and out of the chair. In the beginning of this illness, we had to rent a lift for him. If this is truly PAN/PANDAS, these antibodies can do a lot of damage to the nervous system. Has anyone experienced anything simular to this with their child?

 

From reading many post, I understand that many of you are using natural supplements and special diets. I have already been using supplements and the vitamins that were recommended in some of the threads. I have not tried any diets yet and realize this may be the next step. However, my son has been tested by the gluten sensitive tissue test and it came back negative. My son also has a low IgA but is not defiencient. So I'm not sure if going gluten free would be of help. Would love to hear some of your opinons on a gf diet. My ds is 13 and puberty seems to be delayed in some areas. I am wondering if this is the reason for the hoarse voice. It comes and goes through out the day. Some days his voice is fine.

 

Overall, I am frustrated and just want some relief for my son. However, I really would like to know if IVIG or Plasma exchange has helped a child that has been sick for a long time. Sorry for the long post.

Rachel

 

 

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Rachel, I'm so sorry for all you and your son have been through. Does he have any other diagnosis due to his physical ailments? I was unaware of those types of symptoms, other than difficulties caused from tics and choriform movements. It sounds like your child could possibly have some other type of illness. Have you seen a number of specialists? What are his neuropsychiatric symptoms like? Were you ever able to find an infection or trigger?

 

I'm sorry if you already posted all of this and I missed it. But it really sounds to me like something neurologic is going on in addition to pans or pandas.

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Rachel, I am so sorry for what your son has been experiencing. Has he seen a PANDAS treating doctor ? How was the diagnosis made? From the description of his symptoms have you considered seeing Dr Gallentine at Duke? Duke has an autoimmune encephalitis designated "clinic" and they are actively treating -- I am sure you must be seeing a group of specialists. His symptoms sound like AE but not necessarily the PANDAS type. Still, IVIG may be used for AE - but if it is AE he needs treatment ASAP as I am sure you know -- by someone knowledgable in this most serious illness --

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Hi rachel,

I wanted to give you some hope. My daughter was not treated with any autoimmune tx (steroids, IVIG, pex) until18 months or more post onset. It has been a long road, and now 5 1/2 years post onset, she is much better. this is after all of the above tx and more. She has now been found to have specific antibodies and with consistent treatment and immune supression, she is doing wonderfully.

Some of your son's specific symptoms sound quite familiar to my daughter's. Some are not. Does he have psychiatric symptoms? Was this sudden onset? Has he had any bloodwork done for autoimmune illness (thyroid, sed rate, lupus, there is much more)

I will say that diet had ZERO effect on my children (I have had other children affected, just not as quite severe) Obviously, good nutrition is very helpful, but GF was a complete waste of resouces when we tried it.

I second t.mom's response above and will also send you a PM.

Edited by powpow
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I was just talking to a mom yesterday who' s child has a tentative PANDAS diagnosis. He could not walk for several months. What treatments has your child been given? Are you seeing a PANDAS expert? I would consider taking your son to NY to try and see Dr Najjar or to Duke.

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Hi everyone,

 

Thanks for the responses. My son has just recently been seen by Dr. Rao in Plano, Texas. This doctor diagnosied him with Unspecific Encephalities. He ran several test and we are waiting for results. He started my son on Azithromycin, B-12 shots and three other supplements.

 

My son's vocal tics started after a sore throat back in August 2010. They did a rapid strep test and it was negative. Six months later, my son had walking pneoumia. Two months later a mycoplasam titer showed up out of range in blood work but he was never treated. We left this doctor and got copies of records and found this information 6 months later. My son just kept going down hill.

 

In October 2010, my son was admitted to Childern's OU Medical Center for 10 days of testing. A tilt table test was done and he was diagnoised with Postural Orthostatic Tachycradia Syndrome ( POTS). He has low blood pressure and a high heart rate. So we are currently under the care of a cardiologist. However, our cardiologist realized after a year of not responding to POTS medications, that something was causeing this condition. He was able to get us to Dr. Cunningham for testing and to Dr. Rao in December. Our cardiologist is the advocate for our son. I will be checking out the doctors you have mentioned but I'm hoping we have some answers after some other testing comes in. The hardest part is waiting on test results. The scary part is how it's affected my son's blood pressure and heart rate. My son is on medication to keep his blood pressures up. Thank you so much for your responses. It's so nice to find parents that can relate to what we are going through. So glad I found this forum.

Rachel

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I am sorry that you are going through this. I am sorry to to constantly ring the Lyme bell but the symptoms you are describing including POTS and being wheelchair bound are very common and specific symptoms of Lyme and co. Lyme can be very difficult to assess for a doctor who has not seen and treated hundreds/thousands of cases so unfortunately it is not uncommon for Lyme to be ruled incorrectly. There is a new book out called why can't I get better by Richard Horowitz. It may be worth a look for you, he also discusses pots. I would recommend getting an evaluation by a true Lyme literate doctor who can interpret the tests. Ilads.org should be able to recommend a doctor. There is definitely Lyme in Texas along with ehrlicia and Rocky Mountain spotted fever.

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My son had his onset in May 2009, diagnosis in January 2010, but did not receive his first IVIG until April 2013. We opted to treat with abx first, and have his tonsils and adenoids removed as well. We finally decided to pursue IVIG when abx would only recover him to about 85%.

 

His first infusion was a 100% success. Immediately. We didn't see any regression at all. It was amazing. He has continued to do well with infusions every 8 weeks or so. He got his first strep infection in December - first in over 10 months - a new record for him.

 

So we have seen success with IVIG even though we did not do it immediately.

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