I am so confused, not sure what direction to take

[Topaz1968]

My 9 year old son was diagnosed with TS about 2 years ago and then with Pandas about 8 months ago. He started a round of ABX and seemed to be doing well. But, his neurologist also started him on Tenex because of the sudden onset of OCD type symptoms. This is before I took him to the Pandas doctor.

 

Anyway, it has been a roller coaster ride and lately, I just feel like there is more to his condition, and I am not sure where to turn next.

 

I will try to break it down a bit.

 

His symptoms before ABX (not including tics from TS)

Severe fears of Thunderstorms

Bad thoughts about knives

Bad thoughts about hurting someone

Scared of being alone

Fits of rage and anger

 

Most of these went away after being on the ABX for about 30 days. He had bloodwork done before starting and his Strep titers were very high and it was apparent that he had some sort of strep infection. He also has low antibodies (?) I think that is what the doctor said. His body has a hard time fighting strep if he gets it.

 

I ended up taking him off the Tenex for a couple of reasons. The Pandas doctor did not think he had TS and probably did not need the Tenex and he started to get hives and other allergic reactions, so we were not sure if it was from the Tenex.

 

I stopped the ABX and Tenex to see if his allergies got better and started him on Singulair and a Steroid for 10 days.

 

His hives and allergies are still around. He seems to have exercise induced eurticaria (Sp) that causes him to get severe hives and his eyes swell. The school nurse almost gave him an epi-pen one time. But, Benadryl seems to help with these symptoms.

 

Now, he has some new symptoms that I still think are OCD/TS related. But, some could also be allergy related. He may have had these all along, but they seem to have gotten worse lately. He has been clearing his throat a lot - but tells me it is mucus and he has been scratching his head because he says he has dandruff (which he does) but the itching is constant.

 

One of his old tics has come back also - he squeezes his tush muscles.

 

The other thing I noticed is that he has been more emotional. He has been crying a lot and thinks bad things are going to happen to inanimate objects like his stuffed animals.

 

So, overall it has been a mess and nothing seems to be helping. Unfortunately because of our horrible weather lately I have had to cancel his last 2 appointments and we are supposed to go Monday night - but it is supposed to snow again. The doctor is about 40 minutes away.

 

I did get the name of a therapist that specializes in CBT and I hope to get him in to see her soon.

 

Sorry for the long post, but I just really need some advice as to what to do next. The Pandas doctor does not thing the allergies are related, but if has this Autoimmune disease, I just feel like somehow it is related. Deep down, I just know there is more to this and I want to figure it out so he can just feel better. He is so frustrated.

 

Thanks

[kimballot]

Topaz -I am sorry that you are riding this roller coaster. You mention allergies quite a bit. Is this seen mainly with hives/rashes or does he have respiratory issues as well? Has he ever had problems with sinusitis?

[thereishope]

Is he still taking the Singulair? I know some have had bad experiences with that particular allergy med. That's at least something to try....switching allergy meds.

[LNN]

Take pictures of the rash and swollen eyes - you may in hindsight learn it wasn't hives but something else. Good to have documentation regardless.

 

Is he still on abx? Did you re-check titers to make sure the strep is gone?

 

Also, realize that CBT is a general behavior therapy - very good for anxiety. But for OCD behaviors, you need to do ERP - a specific form of CBT specifically for OCD. Check with the therapist to make sure she does both forms of therapy.

 

Also, ask your son to go 60 seconds without scratching his scalp (or 30 or something that's a small but significant stretch of time). If he can't go that long without scratching, it may be a tic and not just due to itchiness. You can also go after the dandruff to relieve the urge (may not help but gives you something to focus your energy/anger on while you wait for doctors appts).

 

I hope you get to the doctor this week. Sounds like you can use a break...Best of luck!

[Topaz1968]

Thanks for the replies.

 

Kim - luckily, the allergies have not caused any type of respiratory problems. It does not seem to be any kind of asthma. The hives just appear sometimes out of the blue and he starts scratching, which makes it worse. The doctor did put him on the steroid to try and clear up his sinuses, however that was a while ago, he may decide to put him back on the steroid.

 

Vicki - I thought about changing his allergy meds - someone told me that Zyrtek was really good, so I will mention that to the doctor also.

 

LLM - I have not gone back for bloodwork yet, but I think I may have to. It was a nightmare when we took him last time. It was so traumatic for him, that I am not sure if I can ever get him back there. I also have a feeling that he will need to be tested for more allergy related problems anyway, so it may need to happen.

 

He was on the ABX a couple of times since the first round. The last time was a few weeks ago when I thought he may have strep, but it wasn't. I wanted to play it safe.

 

I will try that with his scalp, I thought it might be a tic as well, but not sure.

 

Thanks for the info about the therapy. He does also have a lot of anxiety, so maybe he might need both. Luckily, he has a wonderful teacher and an amazing school social worker that have been a blessing this year. He is now on a 504 plan at school, which really helps if he is anxious or has a lot of tics.

 

Thanks again all, I will keep you posted if we make it to the Dr. on Monday

[kimballot]

You've gotten lots of good advice. I want to encourage you to recheck sinuses if that has been a problem in the past. We have had very similar symptoms to yours through the years and have been surprised by how much was cleared with sinuses. The "low strep antibodies" you are talking about are probably low strep pneumoniae titers. If they are then you really need to look at sinuses. Strep pneumoniae is not the same as Group A Beta Hemolytic Strep (GABHS). ASO and DNASE B titers tell you about GABHS.

 

Strep pneumoniae lives mainly in the sinuses and is one of the main problems with sinusitis. Your son could have BOTH GABHS and S. pneumoniae.

 

If his sinuses are inflamed or infected from GABHS, Strep penumoniae, allergies or any other problem it can trigger a PANDAS/PITAND reaction.

 

Also - you said that you did 10 days of steroid and singulair. My son has had steroids a few times now. The first time we did it with singulair he had bad body itching - right down tot he palms of his hands - with a rash that was not really hives. We stopped the singulair and it went away. The next time we did steroids he had the same reaction (even though he was not on singulair). I had a new pediatrician who told me that kids sometimes feel very itching while loading on the prednisone. Since my son's was not a hive reaction we decided to keep him on it for a couple of days, and within 2 days it was gone and he finished the steroid. About a week after he finished the steroid we went back to singulair and he was fine with it ... so I guess it was not the singulair in the first place!

 

Keep us posted on what the doctor says!

 

Good luck!

[Topaz1968]

Thanks Kim - you were right about the sinuses. The doctor said my son has a sinus infection and wants to put him back on a steroid and antibiotic.

 

I am hoping that works, but last time he was on the steroid, things got worse before they got better. I am going to have to prepare for that.

 

He said that the other allergy symptoms are not related, but I am not so sure. My son has been really irritable the last few days, so I really hope we can get this under control.

 

I will keep you posted

 

Thanks again all.