Post IVIG update

[mom md]

We completed his first IVIG yesterday and Carter is doing really well. We had no issues or reactions and the treatment went well. We did 1gm/kg and it only took 3 hours and was really no big deal (especially compared to PEX). Yesterday after the second infusion he got irritable which I thought could be the steroid load or the IVIG. Later he began having some mild finger/wrist rolls and then started toe walking. I found this fascinating! He toe walked when he was little and I never knew why. He did it again today. We are definitely turning back the pages. I had not seen that in 5 years. It makes me think we have had this since he was probably two. He also had some more chorea and vocal tics this morning but now is resting in front of the TV and doing well.

Also, we did a bunch of labs yesterday and I am still waiting for most of them. Carter's ferritn was 24 last year when he was diagnosed with restless leg syndrome. We tried hard to replace it and got it up to 36. We have been giving him 90mg of carbonyl iron for one year and yesterday his ferritn was 20. I am wondering why he is not absorbing it. He does have a history of inability to gain weight, large stools, transient stomach issues, leg pain, poor teeth enamel (mottled appearance). It is all very interesting. I wonder if he has celiac? All these autoimmune diseases tend to run around together. Can he be tested though if he has been on steroids for three months and also has had IVIG?...all very interesting!

[KeithandElizabeth]

mom md:

 

My son also has low ferritin, poor teeth enamel, low vitamin D, high bilirubin, and he had poor weight gain.

 

Since IVIG, he has gained 5 pounds in the last 4 months!!!

 

Elizabeth

[melanie]

We completed his first IVIG yesterday and Carter is doing really well. We had no issues or reactions and the treatment went well. We did 1gm/kg and it only took 3 hours and was really no big deal (especially compared to PEX). Yesterday after the second infusion he got irritable which I thought could be the steroid load or the IVIG. Later he began having some mild finger/wrist rolls and then started toe walking. I found this fascinating! He toe walked when he was little and I never knew why. He did it again today. We are definitely turning back the pages. I had not seen that in 5 years. It makes me think we have had this since he was probably two. He also had some more chorea and vocal tics this morning but now is resting in front of the TV and doing well.

Also, we did a bunch of labs yesterday and I am still waiting for most of them. Carter's ferritn was 24 last year when he was diagnosed with restless leg syndrome. We tried hard to replace it and got it up to 36. We have been giving him 90mg of carbonyl iron for one year and yesterday his ferritn was 20. I am wondering why he is not absorbing it. He does have a history of inability to gain weight, large stools, transient stomach issues, leg pain, poor teeth enamel (mottled appearance). It is all very interesting. I wonder if he has celiac? All these autoimmune diseases tend to run around together. Can he be tested though if he has been on steroids for three months and also has had IVIG?...all very interesting!

 

 

Glad eveything went well Were still waiting to get the IV.Im tired of waiting but hey .....Tell me more about the restless leg stuff .I think danny has this .He says his legs burn and his feet hurt.Hes always bending his legs twisting but not when hes sleeping.

 

Melanie

[Suzan]

I think the only thing he needs to be on for the celiac test in gluten. As long as he's eating wheat every day, the test should work, unless I just have never heard of those other things affecting the test, although I know false negatives are common in children anyway. His symptoms do sound very celiac. I would get the panel done and then give it a gluten free trial even if the test comes back normal. Have you ever tested his thyroid? I have trouble with my ferritin, iron and vitamin D levels and don't absorb them well even with supplementation.

 

I am so glad the IVIG went so well. Such interesting observations! I've been thinking of you guys a lot. Especially since we are in the throws of possible allergy shot reactions! Things aren't too pretty here right now and I'm confused.

 

Melanie, my dd had burning hands and feet. Our Dan! gave us P5P b6 which made it go away. I don't know if that would apply to leg burning too but I thought I would mention it.

 

Susan

[melanie]

I think the only thing he needs to be on for the celiac test in gluten. As long as he's eating wheat every day, the test should work, unless I just have never heard of those other things affecting the test, although I know false negatives are common in children anyway. His symptoms do sound very celiac. I would get the panel done and then give it a gluten free trial even if the test comes back normal. Have you ever tested his thyroid? I have trouble with my ferritin, iron and vitamin D levels and don't absorb them well even with supplementation.

 

I am so glad the IVIG went so well. Such interesting observations! I've been thinking of you guys a lot. Especially since we are in the throws of possible allergy shot reactions! Things aren't too pretty here right now and I'm confused.

 

Melanie, my dd had burning hands and feet. Our Dan! gave us P5P b6 which made it go away. I don't know if that would apply to leg burning too but I thought I would mention it.

 

Susan

 

 

How is P5P with tics?

[mom md]

His thyroid was normal. Two years ago when he was having issues with focusing and poor impulse control they gave him a diagnosis of ADHD which I did not believe. I did a sleep study aand he was diagnosed with RLS. because he moved his legs 5-7 times and hour to the point of arousal and also complained of burning legs and creepy feelings. They recommended Mirapex which I did not want to do because it is a Parkinson drug that has not been studied in kids. One year later he moved all night long with awlful insomnia and worsening symptoms. His sleep study was repeated and he was now arousing 14 times an hour from movement. They really felt they could not evaluate the day unless he got some sleep because they could not believe how he was functioning. We tried Mirapex for RLS (the Parkinson drug) and it made things much worse! It is a dopamine agonist so it did not agree with PANDAS at all.

We then tried Neurontin. Nothing helped. Then we started seeing chorea, checked his titers, and the rest is history. He may have some RLS though from low ferritin. Iron is a precursor to neurotransmitters and if low can cause RLS.

 

I hate to put the poor child through more testing but it makes you wonder if it is all related in some way.

I think the only thing he needs to be on for the celiac test in gluten. As long as he's eating wheat every day, the test should work, unless I just have never heard of those other things affecting the test, although I know false negatives are common in children anyway. His symptoms do sound very celiac. I would get the panel done and then give it a gluten free trial even if the test comes back normal. Have you ever tested his thyroid? I have trouble with my ferritin, iron and vitamin D levels and don't absorb them well even with supplementation.

 

I am so glad the IVIG went so well. Such interesting observations! I've been thinking of you guys a lot. Especially since we are in the throws of possible allergy shot reactions! Things aren't too pretty here right now and I'm confused.

 

Melanie, my dd had burning hands and feet. Our Dan! gave us P5P b6 which made it go away. I don't know if that would apply to leg burning too but I thought I would mention it.

 

Susan

 

 

How is P5P with tics?

[melanie]

His thyroid was normal. Two years ago when he was having issues with focusing and poor impulse control they gave him a diagnosis of ADHD which I did not believe. I did a sleep study aand he was diagnosed with RLS. because he moved his legs 5-7 times and hour to the point of arousal and also complained of burning legs and creepy feelings. They recommended Mirapex which I did not want to do because it is a Parkinson drug that has not been studied in kids. One year later he moved all night long with awlful insomnia and worsening symptoms. His sleep study was repeated and he was now arousing 14 times an hour from movement. They really felt they could not evaluate the day unless he got some sleep because they could not believe how he was functioning. We tried Mirapex for RLS (the Parkinson drug) and it made things much worse! It is a dopamine agonist so it did not agree with PANDAS at all.

We then tried Neurontin. Nothing helped. Then we started seeing chorea, checked his titers, and the rest is history. He may have some RLS though from low ferritin. Iron is a precursor to neurotransmitters and if low can cause RLS.

 

I hate to put the poor child through more testing but it makes you wonder if it is all related in some way.

I think the only thing he needs to be on for the celiac test in gluten. As long as he's eating wheat every day, the test should work, unless I just have never heard of those other things affecting the test, although I know false negatives are common in children anyway. His symptoms do sound very celiac. I would get the panel done and then give it a gluten free trial even if the test comes back normal. Have you ever tested his thyroid? I have trouble with my ferritin, iron and vitamin D levels and don't absorb them well even with supplementation.

 

I am so glad the IVIG went so well. Such interesting observations! I've been thinking of you guys a lot. Especially since we are in the throws of possible allergy shot reactions! Things aren't too pretty here right now and I'm confused.

 

Melanie, my dd had burning hands and feet. Our Dan! gave us P5P b6 which made it go away. I don't know if that would apply to leg burning too but I thought I would mention it.

 

Susan

 

 

How is P5P with tics?

 

 

 

So it has to do with low Iron?

[Suzan]

How is P5P with tics?

 

I'm sorry, I don't know, my dd has shown signs of possible tics starting but has never had them continue.

 

Susan

[familyof4]

It really takes an upper endoscopy and biopsy to conclusively diagnose celiacs. The blood test can be an indicator but it takes the endoscopy to know for sure. And yes, you do have to be eating gluten to have the tests done.