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4 weeks post IVIg with DR K


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First, Thank you to all of you for putting out such great information and compassion. Due to computer or operator (me) glitches I have been able to read only and not post. DS, 11, has been diagnosed with PANDAS by two doctors with minimal interventions, before I got desperate and contacted Dr. K, did a steroid burst, which was moderately successful. We then traveled from the Kansas City, MO area for HD IVIg in Chicago.

 

After the IVIg, my son developed a head shake, which he had never had before. It is mild, but I am still seeing it from time to time. Is this common. Also, my son developed a horrible rash on torso, sides, and back. This eased, but has migrated to his upper thighs and buttocks area. Also, starting two weeks after the IVIg, the palms of his hands and fingers have peeled horribly. That is starting to heal, but I wonder what causes it. I have read that it could be strep or lots of other things.

 

Also, first two weeks were really wonderful. Still lots of anxiety, but usually only at bedtime. He resolved several issues by himself. He used to call me Mommiepie, not in public, but a lot at home. He said to me, "I shouldn't call you that should I? It doesn't sound right." Also he had tapered off telling me loved me maybe twenty to thirty times a day. Two weeks after the IVIg, my family went to the grocery store like any other family. He went to the bathroom by himself, went and got items from different aisles with his sis or by himself, did not need to hold my hand the entire trip. Bliss!

 

Now at four weeks, we are back to wanting to hold my hand all the time. Wants me to sit with him while he plays Wii, one of his obsessions. He is thinking about kids he hasn't seen for years because he changed schools and is going through crying spells all over again. He cries about the movie Monster House that scared him 4 YEARS AGO. He wants me to sleep with him at night. He is not sleeping as well as he had been. Bad dreams are waking him up. This is all worse than before we did the IVIg. Is this "flipping back the pages"? On the plus side, he is more willing to help around the house, actually go outside of the house once in a while. He also said the suicidal thoughts are gone. Yeah!

 

Regarding Lyme, we were tested in 9/09 by Igenex. Results were IGM, stars only on band 41 and 58. But the IGG had many more bands. They were 18+, 31 (indeterminate), 34+, 41++, and 66+. Doctor was a DAN doc, but he thought the results were inconclusive. I have scheduled an appt. with LLMD in KC, but now I am not hearing positive things (moneygrubbing) about this doc. Ugh...

 

We have been dealing with this since at least when Ryan was 4, but probably longer, because I kept asking the ped "Why is he picking his nails all the time??" He was two at that time!

 

Sorry if this isn't very coherent, but I am stressed, tired, and the story (like most of yours) is so long and convoluted it would be hard to tell it in a short time. Again, I am very thankful for this group because I knew that I was not alone. All of you helped me get through some pretty dark days!

 

Cobbiemommy

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CobbieMommy -

 

Wow! Thank you for posting all of this. I wish I could offer you some Post IVIG wisdom, but we've not yet experienced that.

 

It sounds like you have been dealing with this for a while and you've done a good job finding a PANDAS doc for your son.

 

I am wondering if your son is on antibiotics still. I am also wondering about the LLMD. it seems that would be a very important doctor for you to have faith in. Is there another LLMD you could try? Many have posted that kids with lyme do well post IVIG but may backslide afterward as the underlying infection is not cleared. Perhaps some of the lyme-knowledgable parents could help you find someone.

 

Best wishes to you. Please keep us posted.

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Hello:

 

I am so sorry you are going through this right now.

 

I would definitely suggest seeing a lyme literate doctor because the 18, 31 and 34 bands are lyme specific bands and many lyme doctors consider a positive IGG to mean that the child may have had lyme for a longer term. A lyme literate doctor will also help you to determine which microbes (i.e. strep, mycoplasma, lyme, etc...) your son may have and treat each microbe appropriately.

 

Elizabeth

Edited by KeithandElizabeth
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First, Thank you to all of you for putting out such great information and compassion. Due to computer or operator (me) glitches I have been able to read only and not post. DS, 11, has been diagnosed with PANDAS by two doctors with minimal interventions, before I got desperate and contacted Dr. K, did a steroid burst, which was moderately successful. We then traveled from the Kansas City, MO area for HD IVIg in Chicago.

 

After the IVIg, my son developed a head shake, which he had never had before. It is mild, but I am still seeing it from time to time. Is this common. Also, my son developed a horrible rash on torso, sides, and back. This eased, but has migrated to his upper thighs and buttocks area. Also, starting two weeks after the IVIg, the palms of his hands and fingers have peeled horribly. That is starting to heal, but I wonder what causes it. I have read that it could be strep or lots of other things.

 

Also, first two weeks were really wonderful. Still lots of anxiety, but usually only at bedtime. He resolved several issues by himself. He used to call me Mommiepie, not in public, but a lot at home. He said to me, "I shouldn't call you that should I? It doesn't sound right." Also he had tapered off telling me loved me maybe twenty to thirty times a day. Two weeks after the IVIg, my family went to the grocery store like any other family. He went to the bathroom by himself, went and got items from different aisles with his sis or by himself, did not need to hold my hand the entire trip. Bliss!

 

Now at four weeks, we are back to wanting to hold my hand all the time. Wants me to sit with him while he plays Wii, one of his obsessions. He is thinking about kids he hasn't seen for years because he changed schools and is going through crying spells all over again. He cries about the movie Monster House that scared him 4 YEARS AGO. He wants me to sleep with him at night. He is not sleeping as well as he had been. Bad dreams are waking him up. This is all worse than before we did the IVIg. Is this "flipping back the pages"? On the plus side, he is more willing to help around the house, actually go outside of the house once in a while. He also said the suicidal thoughts are gone. Yeah!

 

Regarding Lyme, we were tested in 9/09 by Igenex. Results were IGM, stars only on band 41 and 58. But the IGG had many more bands. They were 18+, 31 (indeterminate), 34+, 41++, and 66+. Doctor was a DAN doc, but he thought the results were inconclusive. I have scheduled an appt. with LLMD in KC, but now I am not hearing positive things (moneygrubbing) about this doc. Ugh...

 

We have been dealing with this since at least when Ryan was 4, but probably longer, because I kept asking the ped "Why is he picking his nails all the time??" He was two at that time!

 

Sorry if this isn't very coherent, but I am stressed, tired, and the story (like most of yours) is so long and convoluted it would be hard to tell it in a short time. Again, I am very thankful for this group because I knew that I was not alone. All of you helped me get through some pretty dark days!

 

Cobbiemommy

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Hi Cobbie-

 

I would suggest you have the rash looked at--rash and peeling of the fingers and palms is typical of scarlet fever, which is a sequelae of strep throat, usually. Have you contacted any doctor concerning the rash?

 

Best,

JG's mom

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Hi Cobbie-

 

I would suggest you have the rash looked at--rash and peeling of the fingers and palms is typical of scarlet fever, which is a sequelae of strep throat, usually. Have you contacted any doctor concerning the rash?

 

Best,

JG's mom

 

His regular ped said nummular eczema. Pityriasis rosea with no Herold Patch or tinea Corporus with no central clearing. He said it definitely was not a reaction to the antibiotic. He ordered us some Ativar (a souped up Benadryl, basically) for the rash and itching. Also, it helps him get to sleep, but that's not why it was prescribed.

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Hi Cobbie-

 

I would suggest you have the rash looked at--rash and peeling of the fingers and palms is typical of scarlet fever, which is a sequelae of strep throat, usually. Have you contacted any doctor concerning the rash?

 

Best,

JG's mom

 

His regular ped said nummular eczema. Pityriasis rosea with no Herold Patch or tinea Corporus with no central clearing. He said it definitely was not a reaction to the antibiotic. He ordered us some Ativar (a souped up Benadryl, basically) for the rash and itching. Also, it helps him get to sleep, but that's not why it was prescribed.

 

As per Wikipedia.org

one of IVIG side effect is

dermatitis - usually peeling of the skin of the palms and soles.

Thank you for sharing your son's experience with IVIG.

My son had problem sleeping because something that happened 2 yrs ago bothered so much and it was 6 months ago. It was during his adjustment period after his weening away from his ssri meds. I was very very scared but soon his body adjusted and he does not have those flash backs any more.

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I would spend the money to have the COMPLETE CO-INFECTION panel done through IGENEX. My friend's son who had peeling/hands and palms in 2007 and was eventually diagnosed with RF and then PANDAS had similar Lyme results but was POSITIVE for co-infections of Bartonella and Ehrlichia. They feel the Lyme tests will turn positive once he is further into treatment. He had 3 hdIVIGs via Dr. K and seemed to regress post each treatment around week 8... Now, that he is taking multiple antibiotics his recovery is taking off. With your sons results you really, really need to pursue LYME.

 

Dr. K recommends waiting 12 weeks post IVIG to test for Lyme/co-infections. My friend tested her son at 14 weeks.

Edited by SF Mom
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I would spend the money to have the COMPLETE CO-INFECTION panel done through IGENEX. My friend's son who had peeling/hands and palms in 2007 and was eventually diagnosed with RF and then PANDAS had similar Lyme results but was POSITIVE for co-infections of Bartonella and Ehrlichia. They feel the Lyme tests will turn positive once he is further into treatment. He had 3 hdIVIGs via Dr. K and seemed to regress post each treatment around week 8... Now, that he is taking multiple antibiotics his recovery is taking off. With your sons results you really, really need to pursue LYME.

 

Dr. K recommends waiting 12 weeks post IVIG to test for Lyme/co-infections. My friend tested her son at 14 weeks.

I am trying to throw out a wide net for a quicker appointment. We have an appt. in October with one LLMD and another in November with a LLMD that is farther away. The doc that is farther away is actually my first choice, but we'll see how it goes. We put our names on the cancellation lists, so hopefully we will be able to get in earlier than Oct. I notice my DS, 11, is sleeping about 11 hours a night. Is that about right? I read that children with Lyme are very tired. My son gets tired easily and very agitated if he overdoes it!

 

Did your friends son get treated for Lyme by Dr. K or another specialist? Also, Dr. K. just contacted me about increasing the Augmentin to twice a day (versus the prophylactic once a day). Hope this helps my DS.

Edited by cobbiemommy
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re Lyme...I just started reading Cure Unknown (SFMOM's been recommending this book a lot). I'd definitely recommend it for you if you haven't read it yet. It'll give you some great insights on Lyme. As a PANDAS parent, I really love it b/c I can see that there are significant similarities between Lyme and PANDAS (the "politics", how the disease can be chronic, how dose and length of antibiotics matter...).

 

Here's a link http://www.amazon.com/Cure-Inside-Epidemic-Pamela-Weintraub/dp/0312378122

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