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  #1  
Old Mon Jun 9, 2008, 12:54 AM
Henry's Mom Henry's Mom is offline
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Question 4 year old son just diagnosed w/AA last week

My son Henry is 4 years old, autistic and was just diagnosed with AA last week. Henry is regarded as very high functioning with his main challenge being delayed speech. Henry has allergies to dairy and wheat and has been on a gluten free/casein free diet since March 08. We discovered his AA following a visit to a Dr who specializes in treating children with autism. We were looking for answers to Henry's painful intestinal problems, bloating, gas, etc.

About a month ago I started to notice Henry's activity level dropping off and within the past week his color beginning to fade. While in Portland the Dr ran many blood tests on Henry. The first test reported that his RBC was 4.5. We returned home to Boise on Friday and Henry was checked into the hospital, his blood was tested again and his RBC had dropped to a 3.8.

He received his first 2 blood transfusions. The following day he received a bone marrow biopsy. Following the 2 transfusions his RBC went up to a 7.3, we returned home. The next day I received a call from his Oncologist. After reviewing the bone marrow in more detail she has determined that Henry has moderate AA. Henry has 2 sisters and we have all been HLA tested to see if we are potential bone marrow matches.

It has now been a week and a half since his diagnosis and he has already received 3 transfusions. I know we have a long road of discovery ahead of us. I have dealt with autism now for 2 years and in our search for answers and hope for Henry have traveled down many dead end streets. I am wondering if anyone has any advice they could share with me that they wish they would have known. I would like to start out on the right track.

THANK YOU THANK YOU THANK YOU

Also, Henry's speech and communication really picked up following his blood transfusions - any thoughts on this? Anyone else also dealing with autism?
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  #2  
Old Mon Jun 9, 2008, 01:46 AM
Ruth Cuadra Ruth Cuadra is offline
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Hi, Henry's Mom.

Welcome to Marrowforums and sorry you have to be here. It sounds like you are already well-versed in how to communicate with doctors and navigate hospitals, labs, therapists, social workers etc. Those skills will serve you well as you deal with the challenges of Henry's treatment for aplastic anemia.

It's fascinating that you say Henry's speech/communication picked up after he was transfused. Since hemoglobin carries oxygen to the body and the brain, it seems to me that as his counts were declining, his skills were probably being negatively affected. With a fresh batch of red cells in there, his brain perked right up. You should note this to his doctor because it may affect the threshold at which Henry's hemoglobin should be maintained. Although everyone is different, adults are typically transfused when their red count goes below 8.0. The minimum for a child may be different and any special sensitivity Henry may have to low counts should be considered.

As you will see in our discussions, ATG (anti-thymoctye globulin) is typically the first treatment for AA even when a patient has a matched sibling donor for a possible bone marrow transplant. Have you discussed this with Henry's doctor?

Let us know what questions you have. We are here to help.

Regards,
Ruth Cuadra
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  #3  
Old Mon Jun 9, 2008, 08:20 AM
Henry's Mom Henry's Mom is offline
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wait and then wait some more

After his 2nd transfussion his RBC was 7.3. When we went in 5 days later his RBC had gone up to 7.8. I thought this was great news but am not sure if it really means anything profound. The Dr has said that we are now in waiting mode, where we watch and see what his body does on it's own. To wait makes me nervous but I suppose it makes sense. We have been reading quite a bit on the BMT and it's success rate compared to other treatments and our next question is if there is a sibling match is it better to really consider the BMT (even before doing other treatements) since it's success rate is greater. I have read some names of Drs on the forums and am wondering if there is a Dr of choice or a desirable hospital that seems to be on the forefront of treatment? I will talk to our Dr about his increase in talking, it's really a positive side effect for us. Thank you!
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  #4  
Old Mon Jun 9, 2008, 10:05 AM
Marlene Marlene is offline
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Just a thought....have you looked at Henry's meds to see if any have the potential to effect the bone marrow. Also, has your doc checked for nutritional deficiencies. With the the food intolerances he has, it's very likely he does not absorb nutrients adequately. And many autistic children have metabolic issues which effect proper utilization/conversion of nutrients.

B12 (plus MMA & homocysteine), folate, B6, zinc, vit d, copper come to mind. Unfortunately, many doc will accept a low normal B12 serum as acceptable. But when you have the gluten issues and anemia, chances are you need B12. The MMA and Homocysteine levels, if high, are also indicative of a b12/folate deficiency.

Marlene
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #5  
Old Mon Jun 9, 2008, 10:39 AM
Henry's Mom Henry's Mom is offline
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Thank you thank you for your comments on absorption and nutritional deficiencies. That is what led us to the autism specialist. We are meeting with a Gastro Dr in two weeks to look at what is going on inside his little tummy. We received B12 shots to give our son but have not started them since we just found out about the AA. We have asked our Dr a couple of times if we could begin them and haven't gotten any great response so we have held off. I WILL ask again.
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  #6  
Old Mon Jun 9, 2008, 11:28 AM
Marlene Marlene is offline
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Just so you know.....there are various forms of B12. Methlycolbamin is the more bio-available form and does not require your body to convert it to a usable form. Many studies have shown that oral methly B12 supplementation is as effective as the shot even in those whose malabsorb. Most shots are the cyno form of B12. So keep this in mind if your son does not do well with the shots. John takes 1000mcg of oral methly B12. He initially took 5000mcg/day and now does 1000mcg/3x week. You should also make sure Henry is getting the other B vitamins, especially folate.

They do have the more bio-available forms of folate, b6 and b1 if needed so keep this in the back of your mind for possible later use.

Also, with his digestive issues, bacteria overgrowth, of the wrong kind, interferes with B12 absorbtion/utilization. It think the bacteria uses it. Another reason why you see so many with autism using probiotics to rebalance the gut flora.

Has Henry had an Organic Acids profile done? It a 24 hour urine sample that looks at many things. John did one from Great Plains Labs.

http://www.greatplainslaboratory.com/home/eng/home.asp
http://www.ei-resource.org/laboratory-tests/
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #7  
Old Mon Jun 9, 2008, 12:56 PM
Henry's Mom Henry's Mom is offline
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The Dr we saw in Portland ran a whole slew of tests and we are still waiting for the results. He is testing for leaky gut too. I am certain Henry has/had all kinds of yeast overgrowth going on in there and am just waiting to get the results. Some of his tests are being run through Great Plains Lab. I am working on getting other vitamins in to his diet. He does not eat bad food at all but rather is missing things like protein (just really started to get that in with chicken). You are full of great info, thank you (I love it!).

On a side note my husband and I really believe that a lot of this is tied together, autism, gut issues, AA. I'm not sure if we're totally crazy but just something is telling us that. Do you think it helps to know the cause of AA or do you think that it doesn't matter, instead what matters is the treatment now. Henry went through a period where he ate non food items (pica). He ingested carpet and upon research I have found that carpet has benzene in it. Thoughts???
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  #8  
Old Mon Jun 9, 2008, 04:22 PM
triumphe64 triumphe64 is offline
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I googled this and found many references on this. Here is part of one.

Quote:
The first medical condition directly linked to benzene poisoning, aplastic anemia, was discovered in 1897. Aplastic anemia is an umbrella term for a group of blood-related conditions mostly characterized by the drop in or suspension of the production of blood.
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Dallas, Texas - Age 76 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #9  
Old Mon Jun 9, 2008, 06:08 PM
Henry's Mom Henry's Mom is offline
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Thank you for looking this up. I did the same and suspect that this is a real possibility. It has been over 1 1/2 years since he ingested the carpet but it probably took place over a 2-3 month period of time. Do you think it is helpful to know what caused it, would it aid in the treatment of it?
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  #10  
Old Mon Jun 9, 2008, 07:46 PM
Marlene Marlene is offline
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I do think, especially in Henry's case, that all of this is linked together. IMO, understanding and fixing the nutritional & gut issues is critical. Why won't the hematologist respond to your B12 question? I think it could be very beneficial. Your circumstances are unique in that I can't recall any child with AA and autism in the past six years that we've been dealing with this disease. And to find a hematologist who understands both will be a challenge. But you want someone who's treated AA before or one who is willing to work closely with an expert.

Regarding benzene.....it's so hard to pin point a cause unless it happens within 3 months of the exposure. Benzene doesn't stay in the blood very long and it's usually a bigger exposure to trigger it. So small exposures over time are hard to prove. But again, in autism, there's a school of thought that some children do not elimate toxins and heavy metals effectively from their bodies.

There are some post on another forum that talks about the efficacy of treatment depending on cause but I can't recall any of the details. I think if it's a clear autoimmune trigger (like a vaccine), then they think immunosuppressant therapy is pretty effective. You can search the posts on the forum at www.aplasticcentral.com for more info on this. But most never know how they ended up with AA. They do need to rule out genetic anemias (Fanconia, Black Diamond) as well as PNH. So make sure they checked him for them.

There aren't many approaches to SAA....it's either a BMT or IST like ATG with Cyclosporine or High Dose Cytoxan. They usually do not treat moderate AA. So if Henry is in the moderate stage, then hopefully, he'll stay there and you'll have a chance to resolve the nutritional and gut issues.

Marlene
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #11  
Old Mon Jun 9, 2008, 08:51 PM
Henry's Mom Henry's Mom is offline
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Thank you again Marlene - you will be providing hours of discussion for us tonight. I got in contact with Dr David Margolis

David A. Margolis, MD
Associate Professor of Pediatrics/Medical College of Wisconsin
Program Director/Children's Hospital of Wisconsin BMT Program

His wife works w/kids with special needs so he responded to my email right away. We are in the process of setting up an appointment to go visit him later this month. Have you heard of him? Maybe not since he is a pediatric dr.

Our Oncologist has suggested we hold off for a while on the B12 but I think we will continue to push her on it. We are seeing a Gastro Dr (his title escapes me) in the next two weeks and anxiously awaiting results from our visit with the DAN (Defeat Autism Now) Dr in Portland. I mentioned the carpet to him and he said he believes that the toxins could have just been hanging out in there because of Henry's inability to properly digest and remove them from his system.
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  #12  
Old Tue Jun 10, 2008, 01:42 AM
Jenny L Jenny L is offline
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Unhappy Speech delay with AA

My 6 year old Emily was diagnosed in October, 2007 with VSAA. For the very young age patient, we were told by her doctors that BMT is always the first choice if there is a matched Bone Marrow from the siblings. Emily went through BMT on 11/20/2007. She also has some kind of delayed speech which had been taken care of by the speech therapy in her school. Right after her BMT, she started to stutter that was new to her. We do not know what causes her stuttering (Medications or long time restrict isolation?). Her communication and social skills have gotten worse. We will start the private speech therapy for her during the summer. You can send me private message or e-mail if you would like to know more.
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  #13  
Old Tue Jun 10, 2008, 09:41 AM
Marlene Marlene is offline
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Yes I've heard of him....many mom's and dad love him. He's very well respected and is very responsive. And that is great about his wife having experience with special needs children.

I would really pin down your hemo on "why" no B12 at this point. She needs to be more specific on this. Sounds like you and your husband will have to be the ones to decide what to go forward with regarding any treatments recommended between the Hemo and DAN doctor. It a tough role but crucial. It takes quite a bit courage to step up to this but I see that moms are really good at it.

And the point the DAN dr make about Henry's ability to clear toxins/drugs is important because that must be considered if and when he has treatment for the AA once it's clearly diagnosed.

Wishing you only the best.....

Marlene
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #14  
Old Tue Jun 10, 2008, 09:15 PM
Wendy Beltrami Wendy Beltrami is offline
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Henry's Mom!

You will want to speak with Susan Owens who I believe you may be able to contact through DAN. You have probably read some of her work with regard to low oxalate diets and autism. She had aplastic anemia herself as a child and I'm certain she will have a lot of info for you.

She used to post on the old AAMDSTALK forum. I will try to find her email address to send to you. Anybody else out there remember Susan?

Wendy/mom to Grant
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  #15  
Old Tue Jun 10, 2008, 09:42 PM
Henry's Mom Henry's Mom is offline
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Thank you for reminding me about Susan...my DAN told me about her and I briefly tried to locate her on line but couldn't and then got caught up in all this stuff and forgot. I will get w/him and get her contact info. Thank you thank you thank you. I will for sure contact her!
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  #16  
Old Wed Jun 11, 2008, 11:58 PM
skoopman skoopman is offline
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Henry's Mom,

I haven't checked this board in a while so I just now found your post. My daughter was diagnosed with AA at the age of 4 as well. We ended up doing ATG which she didn't respond to and then looked for info on a BMT.

Dr. Margolis is an AMAZING doctor! We live in California and we went to Wisconsin so my daughter could have her transplant there. He is a kind, caring, devoted, and most importantly, knowledgable, dr.

You asked if there was any advice that people would have known from the beginning. A couple of things...

1. Keep track of all lab work and blood transfusions. I put Michelle's in a spreadsheet. If you want to see an example let me know and I can email it to you.

2. Do research and ask questions. When you are done, ask more questions. You will find many dr's who claim to be experts in AA, however many dr's haven't treated more than a couple of AA kids, if that, in their career. There are very few dr's who are truly experts in the field...hence our temporary relocation to Wisconsin for Dr. Margolis.

3. Be prepared for a wait. AA is a disease that requires a lot of patience.

Let me know if you have any questions. You can email me privately, suzanne_koopman@pacbell.net, or post here.

Suzanne
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  #17  
Old Fri Jun 20, 2008, 12:26 AM
ljvoight ljvoight is offline
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Dr. Margolis is a wonderful, caring Dr. We could not go to Wisconsin but he consulted on Danica's case. She had vsAA on 10/06 and had a BMT on 11/29/06 and is doing great!!! Please feel free to contact me or post here.
Wishing you the very best!!!!! Linda V. ljvoight@cox.net
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  #18  
Old Mon Mar 1, 2010, 10:17 PM
susansr susansr is offline
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I am newly diagnosed adult with aa and celiac disease!

Dear Henry's Mom: I was just diagnosed with both celiac disease and AA. I was wondering if your son's docs ever found a connection between the two diseases since they are both autoimmune diseases.

My docs just said very interesting.

How is your son Now with the AA?

I am just 3 weeks post ATG treatment. Any advice with the disease?
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