Need any help and support I can get

[mrigsby]

Allison,

As to answer your question the most support I have gotten has been from this site. My mom believes that I'm on the right track and keeps telling me to stay on it and not take no for an answer on getting treatment for PANDAS, but thats easier said than done. My dad has bad nerves and my son gets on everyone of them. So, I try not to have him around him no more than I absolutely have to, because he inturn gets on my sons nerves. Also, my husband is 15 years older than I am and everything that gets done regarding our family is left to me. He knows my son has problems, anyone thats around my son for more than 10 minutes knows that he has problems. (However most people have the attitude that if I would just discipline him more, maybe he would behave better) People with this attitude have never had to walk in my shoes. And I have one sister, she is not so stable herself, which is understandable. Her only child passed away at 9months and 11days from an extremely rare genetics disorder called POMPE. Most babies born with POMPE don't make it to 5 months. At the time of his death, there were only 15 known cases world wide. POMPE breaks down every organ in the body. There was absolutely nothing we could do for him and no treatment available because it was such a rare disease. When I find myself in the "why is this happening to me mood" I try to remind myself how blessed I am to have two sons. I know that things could be much worse, but it doesn't stop my heart from breaking for my son. My sister is constantly asking about Harley and worrying about him, however she cannot tolerate being around him for very long either. My husband is laid off of work right now again. So money is very tight as usual. My younger child who is 5 is also extremely hyper. So, I donot have the luxury of family members to help me out. They express their concern and tell me that they don't know how I handle everything, but thats as far as it goes. Lately I find myself depressed all of the time, which makes me angry at myself because I have to be the strong one. Harley has a tendency to get on every nerve I have and then I find myself in another room crying because I kept help but think how he must feel inside. I know he doesn't understand why he behaves the way he does, he can't help it. He has been dealing with this for 6 years. And there has never been a time in those 6 years that he has been completely symptom free. Even when one thing eases up, it seems like something else comes along or something gets worse. For instance, until the last couple of days he had been tic free since about June. However, his tics were replaced by emotional lability. He even laughs a goofy laugh when hes aggrivated.

He has absolutely no friends. NONE He does not know how to interact properly with his peers. He is extremely intelligent, however he is also extremely immature for his age. He whines constantly, cries...throughs tantrums, and tattletales. Kids his own age just don't want to be around him. He is on Christmas break right now. However, one week before school got out, the school placed him in a BD class. There are only 5 other children in this class. They told me that he would have to remain in this class until his behaviors changed, because he was too disrupting in the regular class rooms. He has an IEP plan because of his motor skill problems, writing is next to impossible for him. He sees an OCCupational therapist through school. He sees a school based counselor. He sees a regular therapist and a psychiatrist. However, I feel like we just go through the motions with these people, none of them have really been able to help him. He is also in a group called IMPACT that does peer group counseling once a month. The psychiatrist that he sees just wants to add more medications everytime I tell her of a new behavior. I don't understand why it has to be so hard to get proper treatment for our children. Harley has ever single diagnoses related to PANDAS, he has proven history of chronic sinusitus infections and strep throat. In the last 14 days he has tested positive twice for strep. Yet his doctor doesn't think that his behaviors are related to strep. I just feel like I'm going to explode. It only makes since to me that if he was on 10 days of 1500mg a day Augmentin and he tested positive again 4 days later then what he was taking was not strong enough. Yet that is what he has put him on again. I can only hope that now that he has added the 5 days of steroids that we will be able to see some improvements. The ear nose and throat doctor that he has referred us to is out of town for the holidays. Harley will not get to see them until Feb. 17th. And even then, I don't know how this doctor will be about PANDAS.

Sorry for writing a book. I just needed to vent a little.

[peglem]

Boy, sure wish I could come out there and give you a weekend off to have a vacation! I do get exactly where you are right now...so overwhelming that you're losing it yourself and then feeling so guilty because you know its the PANDAS and not your son acting that way.

 

It sounds to me like your son is a strep carrier, which means that the strep is actually living INSIDE the cells. If that is the case (I'm not a doctor!), augmentin is the wrong abx. You need an abx that will go after the strep inside of cells- augmentin will only go after the stuff outside of cells. Zithromax gets intracellular strep, and you need it full strength over a long period of time, and possibly in combo with another abx (like augmentin). Sorry, but I have to let you know that most doctors consider strep carriage to be a benign condition since it is not causing a sore throat and other signs of illness. And most doctors are very hesitant to prescribe high dose zith or other abx over a long period of time, especially if signs of illness are not there.

I don't know how to find the right doctor-that's what you need right now. I got blessed in stumbling upon our current pediatrician. The only suggestion is to find a DAN doctor or you may have better luck from a DO (doctor of osteopathy). They tend to listen better to patients and be more willing to investigate things.

 

You have my prayers.

[MomWithOCDSon]

It sounds to me like your son is a strep carrier, which means that the strep is actually living INSIDE the cells. If that is the case (I'm not a doctor!), augmentin is the wrong abx. You need an abx that will go after the strep inside of cells- augmentin will only go after the stuff outside of cells. Zithromax gets intracellular strep, and you need it full strength over a long period of time, and possibly in combo with another abx (like augmentin).

 

Peg - Are you sure Augmentin will not treat intracellular strep? I was told that, because of the clauvonic (?spelling?) acd, it would go intracellular so long as in adequate dose and duration. Have I been misinformed?

[peglem]

It sounds to me like your son is a strep carrier, which means that the strep is actually living INSIDE the cells. If that is the case (I'm not a doctor!), augmentin is the wrong abx. You need an abx that will go after the strep inside of cells- augmentin will only go after the stuff outside of cells. Zithromax gets intracellular strep, and you need it full strength over a long period of time, and possibly in combo with another abx (like augmentin).

 

Peg - Are you sure Augmentin will not treat intracellular strep? I was told that, because of the clauvonic (?spelling?) acd, it would go intracellular so long as in adequate dose and duration. Have I been misinformed?

No, I'm not sure. It did not clear my daughter though.

[MomWithOCDSon]

Peg - Are you sure Augmentin will not treat intracellular strep? I was told that, because of the clauvonic (?spelling?) acd, it would go intracellular so long as in adequate dose and duration. Have I been misinformed?

No, I'm not sure. It did not clear my daughter though.

 

Yes, I've heard that from some others, too . . . that Azith worked for some, Augmentin for others, Keflex for others, etc. I read somewhere that there are different strains of Strep A prevalent in different parts of the country; I guess there was a particularly virulent strain on the west coast that was resistent to many abx. Frustrating, trying to find "just the right" answer!

[ajcire]

Big hugs... totally on a side note... nothing to do with pandas but I had never heard of pompe but just saw a coming attraction for a movie regarding this... Extraordinary Measures. When I watched the trailer for the movie my very first thought was that the parents portrayed in that movie had the strength and determination of so many of the parents of children with pandas.

[thereishope]

mrigsby,

 

Know that you are no longer alone in this. Even though it is via the computer and internet, you have fund an extended family here and everyone is here to support you and help.

 

I was in the same boat as you. My son was sick. No family except for my husband and kids lived close.Barely anyone asked how he was doing even though they knew he was bad off. I actually got negative remarks from some or heavy sighs when when they were around my son. My parents are both deceased. I truly felt alone.

 

You go through times of feeling desperate and lost. But then at some point, you will have an epiphany and the strength will come. You must know in your heart that your child will get better. That is the driving force. Know it is okay to have times of depression. Allow yourself to break down and cry. I had my share of panic attacks. You may feel you are losing your sanity, but it'll somehow get back....hopefully and eventually:) It's like you're in the middle of a war right now and you need to fight for you and your child to survive.

[matis_mom]

We'll be praying for you... You are going an excellent job at keeping it together for so long!

My advice is to find a doctor that works. It's hard enough to deal with the day-to-day stuff, you need a doctor who understands PANDAS, or at least is willing to look into it, and can relate the behaviors to a physical problem.

We are here to help in whatever way we can!

 

Isabel

[dut]

Hello

 

I agree with mati's mom... get to a dr who believes in PANDAS and who is knowledgable. If you can't get to one, could you do a phone consult.. would your ped be willing to take advice from an "expert" and prescribe what they suggest?

 

If you haven't really got family or some other support on board then you really need a good dr......keep us informed.. good luck