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Run out of options and in crisis


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Our son has had PANDAS since last winter. He was an extreme case that convinced the neurologist. Our pediatrician is still in the mind set of she is not sure it exists, but believes he has had shown the symptoms. He shows anxiety, obsessions, emotional liability, tics, problems in math, and some extreme tantrums. We have have tried various testings, antibiotics, and steriod bursts. He is allergic to penicillins. Azithoromycin causes him extreme pain from the stomach issues. We tried probiotics, yougurt, nothing helped. The last day he took one he was in the bathroom all night long with diarrhea. He was screaming because his bottom hurt so bad. Next we tried the steriod burst. He took 40 mg yesterday morning and for the first time in weeks, actually went outside after school and played with the neighborhood kids. This was a huge sign because he has always been an outdoors kid, active, and that had stopped suddenly. Last night we were up all night. The bone and joint pain from the prednisone was severe. We tried heat, cold, rubbing them, ibruphroen, and nothing settled the pain. He cried and cried.

 

I am so tired of watching my child in pain from the medications. I am so tired of watching him suffer from PANDAS. I feel we are at the end and he will have to live with the PANDAS active, but how? He doesn't enjoy himself, he doesn't play, is completely anxious all the time, and obsesses over everything.

 

Does anyone have any other ideas of possible treatments? My doctor is consulting with a specialist in Southern Maine, but I can't just sit back and wait for them to come up with ideas.

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I am so sorry your child is suffering so much. It is so devastating to watch and you feel helpless. Does Motrin help at all. I know it is basic, but it really helped with my sons rages when we had not other options. It really seemed to calm him. Where do you live if you don't mind me asking?

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I am so sorry your child is suffering so much. It is so devastating to watch and you feel helpless. Does Motrin help at all. I know it is basic, but it really helped with my sons rages when we had not other options. It really seemed to calm him. Where do you live if you don't mind me asking?

 

 

We have tried the Motrin, but not much affect. May be worth a second try since we are not having luck elsewhere. Thanks for the idea. We live in Maine.

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It sounds like you have just started the steroid burst. It may help you to know that our PANDAS specialist says that kids can have trouble sleeping for the first few days of a steroid burst, but that it passes, and that there is nothing to do but wait it out. It is a good sign that he went outside today to interact with other kids. It is possible, if you stick with it, that you will see continued improvement in the next few weeks. Steroids seemed like a miracle in my son, and we then went on to IVIG treatment. Are you working with a PANDAS specialist yet (I highly recommend this) or with the pediatrician that is a bit skeptical. Sounds like you have tried some appropriate PANDAS treatments, but it is hard to be confident if your doctor is not experienced with it. Can you hang in another week or so of the steroid to see the results?

 

Just not sleeping was not the issue. He couldn't sleep because of the severe bone and joint pain that came. It is a possible severe side effect of the steriod. I can't stick it out watching him scream in pain until his night time medications knock him out. It was horrible to watch.

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I am so sorry you are going through this.

 

I really think you need to get to a pandas specialist. I know it s$cks, that it will cost you a lot of money, and you will have to travel- but you need a doctor who is experienced in pandas, not one you had to convince.

 

I say this because they are going to need to guide you through treatment.

 

Did your son have strep? I am no longer necessarily a believer in long term, full strength antibiotics- but if he has an infection it needs to be taken care of for him to progress. Although, it is very likely the infection has passed and you are now left with the autoimmunity. Still- your child needs to have the ability to take antibiotics. How do you know he is allergic to the penicillin family? Have you had him tested? If not, that might be an important test.

 

If the steroids have given your son such an amazing turn around, you probably need a pandas doc to help you continue the steroids through what sounds like side effects. Steroids can cause difficulty sleeping which can last while on the medication. Perhaps the doc can give you something to help with this. If not, perhaps it is something you need to deal with in order to get the end result of improvement of pandas symptoms. I think the aches and joint pain can be from the prednisone depleting potassium. When my kids are on prednisone, I give them calcium supplements (prednisone depletes calcium also) and increase their potassium intake (oj, bananas, cantaloupe, raisins, milk).

 

If the sleep and joint pain are side effects from the prednisone, it is my thought that a doc could help you lessen the side effects, yet still treat with prednisone. To do this, I think you need a doc who is experienced and therefore confident enough in diagnosis to treat through some issues.

 

While I know the pred causes these side effects, I do want to throw out there that my daughter becomes extremely sensitive and nervous (I am not going to say hypochondriac necessarily, but very dramatic over things another kid would shrug off) regarding health and medication while in a pandas flare. While I am not saying this is the case, it is something to consider.

 

Quick treatment will make life easier, as the longer he lives with ocd, the more work it may take to overcome, once the pandas subsides.

 

Do you have an ERP therapist?

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Does you insurance allow you to see specialists out of state? We travel long distances from NC to Philly and CT to see our PANDAS specialists. It sounds like your options are narrow d/t the allergies/reactions to abx. Have you spoken with the neurologist about the joint pain that your son experienced while on steroids? There are further opstions of IVig or plasmapheresis. We never got the help that we needed from the numerous pediatricians that we saw and even a neuropsychiatrist at Duke here in NC was a bust. It is SO important to get to a PANDAS specialist! Your son would benefit greatly from someone who makes it his/her personal and professional business to combat this disorder! Warm wishes and know that you are not alone!! -Kath

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