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Help - Do kids get worse on steroid burst before they get better?


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Hi, I am new to this board, and fairly new to the world of PANDAS too. My 8 yr old daughter has been diagnosed with PANDAS(also has Aspergers). We are seeing Dr. B to treat the PANDAS. We are currently on 2 tsp. 2 x a day of Augmentin and a 20 day (currently on 13th day) of tapered steriod treatment of Prednisolone. She has been worse since we started the treatment. Is this normal? Do kids tend to go downhill first and then rebound? Her OCD symptoms are getting a lot worse since we began the treatment. She is asking me questions constantly about everything, which underwear should I wear, which side of the book should I put the bookmark on, etc. and if I tell her to choose, she melts down and insists that I tell her. Tonight (day 13) was the worst it has been. She couldn't move in her room and was asking me where she should step. This lasted for about 10 minutes. She has sensory issues and is normally very particular about the clothes she wears (only cotton leggings and soft cotton t-shirts), but since we started the treatment, the only thing she will wear is her pajama bottoms with an old stained t-shirt. At first she was embarassed to be seen out in public in her pajama bottoms, but she has gotten over it now and refuses to wear anything else and then has meltdowns because it is the only thing she can wear.

 

I am emotionally and physically exhausted (I'm sure I'm not alone there) and desperately trying to find the right thing to do for my daughter, while trying to take a crash course in various medical treatments and terminology. I am very thankful for websites like this one that have been a huge help! I would really appreciate any response or feedback from parents who have done the steriod treatment before as to what their experience has been.

 

I was told the next step was IVIG and I don't know that we are ready for that yet. To be honest, it really scares me. I am looking into homoepathic medicine as an option before trying the IVIG. Has anyone had success with homeopathic medicine?

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Has Dr B ordered an Igenex blood test? As a general rule of thumb, if a child isn't responding according to "the script" on a given treatment, then it may be a sign that some other sort of infection or disease may be involved - either co-morbid with Pandas or instead of Pandas.

 

The point of doing prenisolone is to calm things down. If you aren't getting those benefits, I'd personally consider tapering down and off of it earlier than planned. I know it's friday and you can't reach Dr B until Monday, but why put everyone through this if it isn't helping? IMO, it's a sign something else may be at play (mycoplasma, a tick borne disease, yeast).

 

(FYI - zinc always made DS worse. He was a ticcer and when I gave him Zicam for a cold, he developed what looked like tardive dyskinesia and his chorea got much worse. When we stopped the Zicam, it went away. You may want to test Vit D and zinc levels before supplementing.)

Edited by LLM
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Guest pandas16

I had pulse steroids and had about a worsening for a month followed by a slow gradual improvement. Doctors explained the worsening as my body getting rid of all the bad antibodies and kind of an explosion going on inside.

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My dd has only had short courses of pred (5-6 days). Both times, she has seemed worse on the pred. (btw, my husband also got really grouchy when he was on pred for a lung problem years ago!) However, about 2 weeks after the pred, my dd would get then better (for about 1 week). So, for us, pred did help, but it was a temporary improvement and her behavior (mood, aggression) would actually get worse for the time she was on the pred.

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Has Dr B ordered an Igenex blood test? As a general rule of thumb, if a child isn't responding according to "the script" on a given treatment, then it may be a sign that some other sort of infection or disease may be involved - either co-morbid with Pandas or instead of Pandas.

 

The point of doing prenisolone is to calm things down. If you aren't getting those benefits, I'd personally consider tapering down and off of it earlier than planned. I know it's friday and you can't reach Dr B until Monday, but why put everyone through this if it isn't helping? IMO, it's a sign something else may be at play (mycoplasma, a tick borne disease, yeast).

 

(FYI - zinc always made DS worse. He was a ticcer and when I gave him Zicam for a cold, he developed what looked like tardive dyskinesia and his chorea got much worse. When we stopped the Zicam, it went away. You may want to test Vit D and zinc levels before supplementing.)

 

Hi, Thanks for responding to my posting. We did do IGenex blood test and it came back ok. We go to a DAN Dr. as well for her Asperger's and he recommended the Zinc as she was very low in it. Vitamin D was recommended by her pediatrician because when we did testing for Dr. B. she was concerned at how low it was. Thanks for the info about the zinc. It is definitely something to consider.

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I had pulse steroids and had about a worsening for a month followed by a slow gradual improvement. Doctors explained the worsening as my body getting rid of all the bad antibodies and kind of an explosion going on inside.

 

 

Thank you for sharing this. It makes me feel better. It's so hard to watch her go through this not knowing if she is suffering for nothing, and getting worse instead of better.

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My dd has only had short courses of pred (5-6 days). Both times, she has seemed worse on the pred. (btw, my husband also got really grouchy when he was on pred for a lung problem years ago!) However, about 2 weeks after the pred, my dd would get then better (for about 1 week). So, for us, pred did help, but it was a temporary improvement and her behavior (mood, aggression) would actually get worse for the time she was on the pred.

 

Thanks for sharing this with me. As a mom you are always seconding guessing your decisions regarding your kids and I was struggling with whether or not we should continue with steroid or taper off sooner than planned. It makes me feel better to know that other people have had similar results from the treatment. I'm sorry that it didn't work for your daughter. If you don't mind me asking, have you tried the IVIG? If so, was it successful for your daughter?

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My dd has only had short courses of pred (5-6 days). Both times, she has seemed worse on the pred. (btw, my husband also got really grouchy when he was on pred for a lung problem years ago!) However, about 2 weeks after the pred, my dd would get then better (for about 1 week). So, for us, pred did help, but it was a temporary improvement and her behavior (mood, aggression) would actually get worse for the time she was on the pred.

 

Thanks for sharing this with me. As a mom you are always seconding guessing your decisions regarding your kids and I was struggling with whether or not we should continue with steroid or taper off sooner than planned. It makes me feel better to know that other people have had similar results from the treatment. I'm sorry that it didn't work for your daughter. If you don't mind me asking, have you tried the IVIG? If so, was it successful for your daughter?

 

We did the steroids as a way to get things under control temporarily (we didn't really expect the steroids to give us lasting improvement). In a sense, the steroids helped a bit b/c both times we did them we were in an exacerbation. The first time was after my PANDAS dd got H1N1 (actually the whole family got sick). We had already planned on IVIG at that point, but my PANDAS dd got sick with H1N1 and we had to postpone...and then she was in a worse exacerbation due to the H1N1, so the steroids, were a stop-gap while we were waiting for our rescheduled IVIG date.

 

The second time we did a steroid burst was about 6-8mo. after IVIG #1. My dd got a fever (her 1st fever since IVIG #1) which resulted in an exacerbation. We doubled her antibiotics, and then tried the burst to see if it would get her back to baseline. The burst helped temporarily but it wasn't sustained so we did IVIG #2.

 

I would say that steroids seem to work as a treatment for some kids. I think my dd might have been one of the more severe cases of PANDAS. When we checked her CaM kinase 11 when she wasn't in an exacerbation, she tested in the high PANDAS range. When we retested her after H1N1 (just before IVIG #1) her CaM kinase 11 came back in the high SC range (the highest Dr. Cunningham had ever seen).

 

I would say IVIG was successful, but not a 100% cure. My dd still has some residual symptoms. I would say she's about 90-95% now..certainly a world better than when her PANDAS was full-blown in 2nd grade (she was hospitalized for acute food refusal/anorexia). She's in 5th grade now. She's still on full-strength Azith, daily advil (okayed by the rheumatologist), and a low dose of prozac.

 

I do like Dr. B.'s approach (multiple HD IVIG's) vs. Dr. K's approach (1 IVIG in most situations). I do wonder if my dd would be closer to 100% if we had taken that approach. (We haven't seen either doc, we did IVIG locally in CA.) Maybe Dr. B.'s approach is more likely to bring a cure? It's hard to know.

Edited by EAMom
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...I do like Dr. B.'s approach (multiple HD IVIG's) vs. Dr. K's approach (1 IVIG in most situations). I do wonder if my dd would be closer to 100% if we had taken that approach. (We haven't seen either doc, we did IVIG locally in CA.) Maybe Dr. B.'s approach is more likely to bring a cure? It's hard to know.

 

Hi EAMom--Do you know what the protocol is for Dr B's approach? 2/kg?, how often? how many times? --is it done whether or not the child continues to be symptomatic??

 

I hope that SOMEONE is monitoring the effects of these different treatment approaches--to try to determine what IS working and what is not.

 

We really need a focused "band leader" among the parents or doctors, someone who can bring them together yearly to compare what is being tried and what works for our kids. Please.

 

The momentum is not easy to sustain unless there is continuing, focused effort. NIH would be the logical place to carry the torch on this, let's hope they seize the opportunity. The Autism bio-medical movement had Rimland (a parent and PhD researcher), and subsequently Edelman, at the helm of gathering doctors and researchers on a yearly basis to confer (from across the country) as to what people were "trying" and what results were being seen.

 

From that grass-roots movement (validated by the presence of CONCERNED doctors and caring researchers) came an incredible movement of help for children with autism.

 

Let's hope this wave of interest in PANDAS/PITAND results in better treatment and focused research that is tied together by collaborative sharing of information so the suffering children, afflicted by this horrible illness, will be well again.

Edited by T.Mom
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Welcome!

 

Our experience has shown, and it seems generally, that the Prednisone can take 1-2 weeks to kick in and, yes, they can continue to progress and get worse during that time. My recommendation would be to stick with it for 2-3 weeks before giving up.

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