Immunology Follow-up

[ShaesMom]

Please keep us posted on what you find out about this kids after six months of IVIG. Our Immune suggested we go for two years before retesting.

[kim]

I wanted to leave you this in addition to response on page 1 of this thread, to help you see my concern over giving your son Prevnar now, then the flu vaccines. I'm assuming these are all to be given some what close together.

 

http://www.generationrescue.org/binstock/0...imer-autism.htm

 

Aluminum in vaccination-associated cognitive decline, motor neuron disease, autism

[sf_mom]

Its a relief to know your son is responding well to treatment!!!! Hope you are home soon from the hospital.

 

Wanted to make a slight correction to your post. In our case I think it was contagious and believe the immune system got wiped out from trying to fight the bacteria over a period of time.

 

Our Son: 124 PANDAS exposed to Scarlet Fever from Adrian at playdate, failed 10 of 14 serotypes

 

Adrian: 147 PANDAS had Scarlet Fever at time of playdate, failed 12 of 14 serotypes.

 

Our Other Son (was 5 1/2 month old at time): Also at playdate, got sick but treated with IVIG on day 5 of high fever. Thankfully he isn't showing any signs of PANDAS.

 

-Wendy

 

 

 

I don't remember if he had a reaction to the prevnar vaccine and back then we did not know about PANDAS. I wish I could remember. Also, I am so sorry you have two sons with this. Very scary. I have read several of your posts though and you have been very pro-active which is wonderful. Good luck. Strep pneumonia is treated with IV Rocephin. No one has mentioned IVIG becuase he appears to be responding well. Hopefully we will be home soon.

Did you see a reaction to the prevnar vaccine at all? Flair in PANDAS symptoms? I'm fairly convinced that the kids with compromised immune systems need monthly IVIG to jump start their system.

 

 

So sorry to hear your other son is now sick. How do they treat Strep pneumonia... will they be administering IVIG or do they just do straight high dose antibiotics. The thought of it possibly of it passing along to your PANDAS son is scary. I'm sure you know our story by now...... Son's friend had Scarlet Fever at time of play date 'both' my boys got sick, one ended up in hospital and treated with IVIG 5 days into high fever, my other son and friend went untreated and both are PANDAS now, both have compromised immune systems.

[KeithandElizabeth]

SF Mom:

 

I am curious about a post where you mentioned something about Dr. K saying there may be some sort of connection between Kawasaki's and PANDAS. Is this what he said? We have a friend with a 12 year old son who had Kawasaki's at 18 months and ended up with 2 heart aneurisms from it. He now has horrific OCD and will not leave the house. They are going down the psychiatric route, but of course I am thinking PANDAS. I am suggesting that they consult with Dr. K.

 

Elizabeth

[ShaesMom]

We saw the immunologist Friday and she said my son is more than likely immunocompromised in some way. She said he has horrible allergies which are not well controlled and we need to start allergy shots. Latimer said this was fine. He also failed his diptheria and prevnar vaccine and she wants to repeat them. If he fails the prevnar again we will start IVIG on a regular basis. She said she would do Vivaglobin which is a new subcutaneous form which can be given at home weekly. She said it is much easier. She also said that she would go to battle with the insurance company and they would have no choice but to pay if we prove he fails his vaccine.

She and I talked about the fear of vaccine starting PANDAS again and she said, we can treat PANDAS but if he is truly immunocompromised and you don't know it things could get much worse. She also wanted him to get both flu-shots ASAP. She did say all these vaccines needed to be given seperately so he only deals with one at a time. Last week I could not find a flu shot and so I guess I will try to do the prevnar this week.

On a side note, I am sitting in the hospital now with my other son, Spencer who is 5, who has pneumonia. I think it is bacterial but it hit him like a freight train Thursady morning and we were admitted Friday. His flu was negative and they think it is strep pneumonia. The flu test is only 50/50 so they are not sure. Strep pneumonia is a different strep than strep A and not very contagious. It makes me a little anxiuos though that Carter failed his prevnar vaccine. We are doing much better though and should be discharged tomorrow. For the first two nights though we thought it was swine flu and pneumonia. Very scary. After being here and watching a child who is so sick and seeing the report of 88 kids dying from swine flu I think we will all get the vaccine. My thought is Carter(who had PEX) probably is somewhat immunocompromised and not getting the vaccine could possibly be something I regret. I know it is a tough decision but that is where I stand on it today.

 

Our Immuno also wants us to get both flu shots for our dd. I have decided that at this point we are all skipping the H1N1 flu shot and everyone in the family except Pandas daughter will get the regular flu shot. I don't know if this is the right decision or not but I'm sticking with the decision.

 

Just curious-Why is she recommending Prevnar over Pneumovax?

 

Hope your other son gets better quickly and everyone else in the family stays healthy.

 

Sam

[sf_mom]

Well the connection is strong in our case between what appears to have been Scarlet Fever and Kawasaki's!!!!! Dr. K seemed to think it was possible that the Kawasaki's was an extreme presentation of PANDAs. The symptoms are very similar between Scarlet Fever and Kawasaki's. There is two unique symptom in Kawasaki's that is not typical in in Scarlet Fever and that is pink eye 'AT IT EXTREME' in both eyes and the attack on the heart ventricles. AND, you know about the study out showing Strep related TIC Disorder and a high percentage of heart abnormalities... hence the connection from Kawasaki's to PANDAS.

 

Do you know if your friend's son was treated in the first couple of days of high fever? I bet anything if he wasn't that is the reason for his current OCD. Typically, children are so sick when they have Kawasaki's they end up in the hospital and are treated with IVIG and sometimes it takes several treatments. For our son, he recovered within 24 hours after IVIG and seems to be fine but he is only 2 years 4 month old.

 

 

 

SF Mom:

 

I am curious about a post where you mentioned something about Dr. K saying there may be some sort of connection between Kawasaki's and PANDAS. Is this what he said? We have a friend with a 12 year old son who had Kawasaki's at 18 months and ended up with 2 heart aneurisms from it. He now has horrific OCD and will not leave the house. They are going down the psychiatric route, but of course I am thinking PANDAS. I am suggesting that they consult with Dr. K.

 

Elizabeth

[mom md]

i really appreciate all ythe active discussion regarding this topic. We came home today and I am exhausted. I want to read and reply to ythese posts but I am wiped out. My son with pneumonia dropped his blood pressure throughout the night and it was a long night. They said he was OK to go home this afternoon. I hope they are right.

I read the web-site of the girl who got the pneumovax after PEX and was set back for two years and I am scared to death. I think for now I am going to do nothing and really talk to the immunologist about other options. I am also very hesitant about the flu shots. We are doing so great after PEX I hate to mess with anything. Dr. Latimer OK'd the allergy shots which I will do, but I think I will hold off on everything else for now.

Interesting though I did see a little shoulder roll tonight that was a small chorea movement. Dr. Latimer said we would continue to see subtle signs, especially when he was tired. we have all been through a lot this weekend and my guess is that is what brought it on. I think though it was also a little message from someone above to not mess with success right now...a little reminder of how far we have come.

[Megs_Mom]

Hi Mommd - we are still waiting on immuno testing, but will be done by end of October. We have same immuno as you. Meg is doing so well, however, that I am really doing this as a data set for the future. I don't think we'll act on any results unless she gets ill again, and then it may change what we allow for her medically. We postphoned the Immuno/Neuro appt at Emory until after the results come back in, so that we can get a second opinion before we do anything else. I'll be sure to share results here. Everyone is also pressing us for flu shots & I have no idea what we are going to do on that front. Given her contamination fears during an episode, we are all concerned that the flu may set her back significantly, but on the flip side, we are concerned about the H1N1 vaccine as well. Bit of a quandry. At this point, it is not available here, so we have a few more weeks to make the decision.

 

I will be thinking of you and your other son tonight -and pray that all goes well. They are both lucky to have you as their mom. Best -

[mama2alex]

i really appreciate all ythe active discussion regarding this topic. We came home today and I am exhausted. I want to read and reply to ythese posts but I am wiped out. My son with pneumonia dropped his blood pressure throughout the night and it was a long night. They said he was OK to go home this afternoon. I hope they are right.

I read the web-site of the girl who got the pneumovax after PEX and was set back for two years and I am scared to death. I think for now I am going to do nothing and really talk to the immunologist about other options. I am also very hesitant about the flu shots. We are doing so great after PEX I hate to mess with anything. Dr. Latimer OK'd the allergy shots which I will do, but I think I will hold off on everything else for now.

Interesting though I did see a little shoulder roll tonight that was a small chorea movement. Dr. Latimer said we would continue to see subtle signs, especially when he was tired. we have all been through a lot this weekend and my guess is that is what brought it on. I think though it was also a little message from someone above to not mess with success right now...a little reminder of how far we have come.

 

MomMD,

Hope your son is doing better. I'm sure he'll bounce right back quicker than you think. Our son has been hospitalized twice for pneumonia and he recovered faster than we did!

 

I was wondering, are you doing immunoloy testing on Spencer as well? An immunologist recently said to us that its not normal for any child in the U.S. in this day and age to have pneumonia, let alone need hospitalization. In other words, its a red flag. Our son has had pneumonia 6 times now and it was during the last pneumonia that he had his PANDAS exacerbation that led to his diagnosis (we think his first may have been when he was hospitalized 3 1/2 years ago).

[colleenrn]

MomMD_

So sorry about your son being so sick. Glad he's doing better. I just wanted to post, in case anyone is not aware, that if you get the H1N1 vaccine, to get the single dose shot. The multi dose vials do contain 25 mcg of thimerisol (these are the ones they are giving in school based vaccine clinics). The single dose shots have no thimerisol in them.

 

Also, you can take oscollococcinum to prevent the flu. Even if it does not prevent it, you will get a much milder case of it. My 8 yo has had the flu for one week now, doing a lot better. As soon as I realized it was the flu I started giving him a treatment dose of oscillo (one vial every 6 hours) and giving my other 3 kids and myself a preventive dose (one capful each day). So far my 3 yo has the flu, but so mild compared to my other son. My 6 and 13 yo have not gotten it and they have been heavily exposed to it for a week now.

 

Kids are testing negative frequently for the flu when they really do have it. There is a large number of false negatives, so many, that a lot of docs have completely stopped even testing- they are just going on symptoms. Is it possible that Carter had the flu as well as pneumo?

 

Colleen